Chronic Illness Disability

Community Roundup: How Often Do You Think About A Cure?

When you have a condition, the prospect of a cure can inspire hope, but that hope can also sometimes get in the way of recovery. So how should you think about it?

For people living with chronic conditions, the prospect of a cure can both inspire and dishearten. After diagnosis, some organize their lives around a search for healing. Others focus on living well with their condition, refusing to be defined by sickness and cautious lest the hope for a cure distract them from the life they have.

That’s why, for this week’s Community Round-Up, we asked Folks’ followers: How often do you think about a cure? To what extent does it shape your daily reality? Some responses have been edited for clarity.

Sonya Huber:

Sonya Huber

I do sometimes think about a cure, mostly when I hear about people with rheumatoid arthritis who went into remission. I allow myself to imagine what it might be like to be fully mobile and pain-free again, but then I have to put that out of my mind. Because this is my life, this is my body, and I go forward into each day with joy only if I love and care for the skin I’m in.

Sonya Huber is the author of five books, most recently Pain Woman Takes Your Keys and Other Essays from a Nervous System. She can be found on Twitter at @sonyahuber.

Claudia Merandi:

Claudia Merandi

I never thought about my illness, Crohn’s, having a cure. I’ve only known what it is to be “sick.” But I live as a “healthy sick person.”  I never considered myself to be “that” sick. I only knew a hospital bed for 20 years and I still didn’t think I was sick. Maybe that’s why I’m still fighting. If there was a cure, I wouldn’t be who I am today and I love the person I am today. I am Crohn’s. Crohn’s isn’t me. I am everything before I am a person with Crohn’s.

Claudia Merandi is the author of Chron’s: The Other “C” Word. She is also a patient advocate/activist, author, and Crohn’s Warrior. She can be found on Twitter at @CMerandi.

Jed Findley:

Jed Findley

A cure? Preposterous! I never think about a cure. I am solid in the fact that Ankylosing Spondylitis is incurable. They barely have a genuine treatment right now. I think we are far far away from a cure. Thinking about what may be causes a lot of grief. Like dreaming of living comfortably in a huge house when you are barely making a living. A cure is a fairy tale and getting ones hopes up for Prince Charming is only going to lead to a huge letdown. I don’t need this kind of depression in my life. So, I don’t even dream of a cure.

Jed Finley is a Special Education teacher in his mid 30’s who was diagnosed with Ankylosing Spondylitis at 12 and created the Facebook-based support group Living With Ankylosing Spondylitis. He can be found on Twitter at @JediMaster941.

Saidee Wynn:

Saidee Wynn

Honestly, I don’t think about a cure that often. It will occasionally burst into the forefront of my mind, but I try to push it right back out. There may never be a cure for my illnesses in my lifetime. If I were to hold onto the belief that a cure is coming, I feel I would end up putting my life on hold.

Saidee Wynn writes about life with chronic illnesses and disabilities. She can be found on Twitter at @spwarriortweets.

Eric Valor: 

Eric Valor

Pretty much every day. I think about it in terms of my own research for a cure and about what I will do to get my life back when cured sufficiently to regain my movement. It’s my single most motivating thought.

Eric N. Valor is an IT professional turned self-taught neurology researcher focused on ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease). He can be found on Twitter at @surfiving.

Farrah Kaeser:

Farrah Kaeser

On a personal level I have resigned myself to the fact that there is no cure for the conditions I have (Fibromyalgia, Ehlers Danlos, and more), and that there probably won’t be in my lifetime. In fact, doctors and scientists don’t even fully understand (and some “don’t believe in”) my conditions, so the idea of a cure seems unrealistic. Dwelling on it really doesn’t help me any, as it doesn’t change anything or move me forward in life, rather it exacerbates my depression and brings me down.

But on a professional level, it’s a different story. When I got my first diagnosis (fibromyalgia), the fact that my doctors so nonchalantly told me they didn’t even understand the mechanism behind my pain, that it would just get worse and worse, and there was no cure, good luck, flabbergasted me. So much so that I have spent the last 9 years in school for Natural Medicine. I now am completing my doctorate, in hopes of finding a better understanding of what’s happening on a neurological and cellular level in the body,  as well as possibly developing either natural or integrative options to help manage symptoms. I work every day for a cure for my conditions and others, but am aware that while my work is important and will hopefully be beneficial, likely we will not see notable results in my lifetime.

So, in conclusion, the answer is two-fold. It is both an ever-present dream and goal, but one that I do not place any hope in for myself. I hope I am surprised by a development that can benefit me. That would be life changing! But for me personally, clinging to an unlikely dream does more harm than good. But working towards making things better… that’s the key.

Farrah can be found at Twitter at @FarrahGarland and Facebook at @FarrahGarland. She blogs at

Forester McClatchey:

Forrester McClatchey is a regular Folks contributor on diabetes. Our favorite luddite, rejecting social media of all kinds.

I don’t think about a cure very often. Partly this is because my illness (Type 1 Diabetes) has become so manageable that it’s rarely a source of great suffering. Partly it’s because I don’t want to get my hopes up. Now that I think about it, I realize that I actively avoid thinking about a cure. Here’s why. With T1D, discipline is essential to self-care. Your body is a daily science experiment, and that means you have to be a good scientist (rigorous, detached, thorough, empirical). The promise of a cure, however distant, would erode those virtues—especially the discipline—by making them seem less necessary. So I approach cure-talk with a lot of caution and skepticism. I dream about a cure, but I try not to feel entitled to getting one.

Having worked as a cartoonist and a factory hand, Forester McClatchey is currently an MFA Candidate in Poetry at the University of Florida.

Amy Nicewicz:

Amy Nicewicz

Living with Crohn’s disease has been one of the biggest battles I have ever faced. With a cure, my entire life would be different. I am used to the pain, sadness, worries, and what feels like loneliness. Every six weeks I arrive at the hospital for my treatment. I stay for a couple hours and wander the halls rolling my IV stand by my side. On the days I lose hope for a cure, I remind myself how I must live life as much as possible right now. I imagine my twelve-year-old self, lying in a hospital bed for an entire week. I was thin, frail, confused, and standing on the cliff of death. These experiences shaped me into who I am today. I aim to live in the moment more. I never forget to remind those I love how much they mean to me. Not knowing when and if a cure will come is how I power through the day. People who share the same chronic illness create their own empowering community together.

Amy is a sophomore in college studying Wellness and Alternative Medicine. She loves animals, music, and the outdoors. She can be found on Twitter at @SmileFighter1.

Rhiann Johns:

I only really think of a cure when I am in a dark place, or when the frustrations and reality of living with a neurological condition become evident. For example, the times when I run out of ingredients while cooking.  It is times like this when I consider the reality of how these symptoms affect my life and wish I was ‘normal’ so that I could simply shop by myself instead of being so dependent on others just to get out of the house or to go shopping for me. However, in my opinion, it is not particularly productive to allow thoughts of a cure to influence or shape your daily life.  For me, doing so would only set up myself for endless disappointment and would leave me with more negative feelings and resentment toward my neurological condition.

That is why I instead to focus on the present.  By doing so, I can live the best life possible despite the neurological condition I live with and the symptoms that can cause many disruptions in my life. A promise of a cure comes with many different words such as ‘possible,’ ‘chance’ or ‘might.’  Words which are only mere possibilities and no real definites.  I prefer definites, and so I prefer the present rather than to dwell on the future and what it may or may not bring.

I will sign off with one of my favorite quotes: “Yesterday’s history, tomorrow is a mystery, today is gift, which is why we call it the present.”

Rhiann is a Psychology graduate who was only recently diagnosed with Functional Neurological Disorder (with a host of other issues!) and who shares her experiences with living with a neurological condition at My Brain Lesion and Me. She can be reached at Twitter at @serenebutterfly.  


Do you have thoughts on this issue? Follow us on Twitter @FolksStories and tweet us to add to the conversation.

Chronic Illness

The Researcher Who Planned His Own Surgery in Virtual Reality

When professor Larry Smarr discovered he had Crohn's Disease, he tackled it the only way he knew how: with technology.

Larry Smarr, a polymath and computer science professor at the University of California, San Diego, is accustomed to self-analysis. If something in his body can be monitored, evaluated or picked apart–his sleeping habits, heart rate, DNA, stool–he’s done it. In fact, he does it, constantly. All of the data goes into what he calls the Quantified Self, a digital collection of regularly updated figures and measurements of his physical makeup. Nearly everything that enters and exits his body is analyzed. So to those who know him it was no surprise when he decided to digitally map his colon.

At the time, Smarr had been quantifying himself for years, using for-profit labs that he found on the Internet, when, in 2008, he discovered something unusual. From one of his regular blood tests, he found that his body’s inflammation levels were through the roof. “Something terrible,” he told his doctor, “is going on inside of me.” Exhibiting no symptoms, the doctor sent him away, telling him to come back when he felt pain–all he had at that point was numbers. But the data hadn’t lied and soon, after symptoms appeared in agonizing droves, Smarr learned that he had Crohn’s, an inflammatory bowel disease. When it was determined that the best course of action was to remove part of his colon, Smarr presented an odd request to his surgeon: to plan the surgery using a virtual reality map of his insides.

Though Smarr has a background in astrophysics, he is also a leading expert in virtual reality. All of that data from his years of quantifying himself he had converted into what he calls a Transparent Larry, a digital reproduction of his insides produced from MRI scans which could be explored in virtual reality. The surgery, he proposed, could be meticulously planned through using both these virtual reality maps and a 3D-printed model of part of his colon which he had had made. His surgeon, Dr. Sonia Ramamoorthy, a leader in integrating robotics into surgery, took to the idea. In the end, the operation was a major success. Smarr calls it “the quantified surgery” and now he and Ramamoorthy want to standardize the approach.

Their logic is simple: we use virtual reality in planning all sorts of things, from architectural projects and product design to space travel. Why not in medicine too? We reached out to Smarr to hear more.


Larry Smarr.

Take me to the beginning. How did your idea of the Quantified Self come about?

When I came to San Diego after teaching at the University of Illinois for twenty years I looked like the average American: overweight or obese. Two-thirds of American, at least, are that way. I looked around and everybody here in San Diego was healthy and thin. I thought, how does that happen? In most of the country, everybody looked like me. It was the frog in the boiling water scenario, with the water heating up without it noticing–that’s how the obesity epidemic has gone on for four decades. So I decided to make some changes. I got an exercise coach, started questioning my diet, reading books on nutrition. I realized, “Gee, there’s a science to this.”

As I began to lose weight, I wanted to know how well I was doing. As a scientist, if you’re going to do an experiment it’s important that you measure the rate of a change in a longitudinal time series. So I started recording my weight every day. Whenever I went to the doctor for a check-up, I asked for the data from my blood test. I started accumulating it. I realized there were all kinds of things I could track. One example is you can do a test that looks inside your red blood cells and get twenty or thirty different chemicals, like magnesium or chromium, recorded. I was trying to make sure that I was putting together a diet that had all the right micronutrients. I realized that I could start titrating my diet by the value in my blood: if a vitamin was low I could take a supplement or eat more spinach for iron. Simple things really. But the idea that as an individual you would do that seemed to be very rare in the way people operated. Yet it seemed totally logical to me.

With the success of Fitbit and other health apps, quantifying one’s health is a sort of movement these days, though, correct?

Well, it’s like how everybody thinks the internet showed up in 1995 but in fact is came about in ‘72. There’s been a growth curve. The Quantified Self movement has been slowly growing for decades and it’s gotten finally to the point where you actually know somebody who does it. It hasn’t just been all of the sudden.

How does, “being the CEO of your body,” as you’ve called it, affect your daily life?

When you realize that there is nobody other than you who is going to take care of your body that changes a lot about your lif

When you realize that there is nobody other than you who is going to take care of your body that changes a lot about your life. You eat better, you exercise, you sleep more. Most people are causing their own future disease by neglecting to think about what they eat or do, things that will have a downstream negative impact on your health. It’s just an abrogation of responsibility, fundamentally. I find it so weird that people think quantifying your body is strange. We quantify everything. How many people think that a quantified approach to investment is crazy? The thing that I find bizarre is that in our culture people think that knowing what goes on inside of your body is not something that’s their responsibility. They know more about what’s on Twitter than about what’s going on in their body. How crazy is that?

Is Quantified Self your term?

I don’t know whether I coined it or not. But I’m one of the few people who have actually quantified themselves through this many variables. I keep track of over one hundred things, between blood and stool variables. Then I’ve also started doing 3D quantification of my body using MRI scans. They put the data on a CD for me and then in my institute Calit2, at UCSD, we can put that into computer graphic software and build a Transparent Larry. But it can be a Transparent Anybody who has the MRI data.

What is “the Cave”?

My colleagues and I have been pioneers in over thirty years in building VR systems. The Cave is a walk-in VR room where you just put polarizing glasses on, you don’t have a head-mounted display, and can see a digital map of my body.

In the operation on your colon, this was very helpful?

Absolutely. It turns out that we all differ in detail with our internal anatomy. My surgeon Dr. Sonia Ramamoorthy is fantastic but this was the first time she had ever done 3D pre-surgical planning. It’s sort of amazing to think about. In computer science, it’s been 25 years at least since we knew how to take the slices of MRI and put them back into a transparent 3D model. The fact that it has not been adopted in most fields of surgery–they do use it some in brain surgery and some cardiovascular surgery–but it’s not at all standard in abdominal surgery.

What do you think was more helpful to your surgeon, Transparent Larry, or the 3D printed colon?

Transparent Larry. My colon differs in shape than the textbook colon and as I told the surgeon, “You’re not going to do surgery on a textbook, you’re doing it on an individual.” Without the 3D planning, Sonia wouldn’t have been able to enter my abdomen at the right place. She would have had to do a lot more work, probably an extra hour and a half of work while I’m under anesthesia And the length of time you’re under is the main thing that correlates with patient outcome after surgery. So it made a big difference.

Larry showing off “Transparent Larry,” a 3D model of his guts.

The field of surgery is notoriously resistant to change. How do you convince other surgeons to adopt this practice?

The market will bring it to them. People who make the scanners are perfectly capable of creating a 3D model from the data; it just hasn’t been requested by the customers before. I talk to some of the companies that make the scanners and they all have in-house versions of this. But the radiologists who they view as their customers are used to looking at everything in 2D so they don’t really have a need for it. But the surgeons, who work only in 3D, actually don’t get too much out of the 2D slices.

Are you actively lobbying for this technology to be integrated into medicine?

As a professor, I’m putting together a research program with my surgeon, radiologist and computer graphics people and any private sector companies that want to be part of this. Then the idea is to gradually improve the capability of this and get it used on more patients. Sonia would like to do a dozen patients like this right away.

You’re hopeful that VR pre-surgery planning will eventually be standardized?

Absolutely. There’s no question about it.

By the way, how is your health these days?


Chronic Illness

What Cats Can Teach Us About Living Life When You’re Sick

Cat behaviorist Aimee Malpass, who has Crohn's Disease, says that cats are the kings and queens of mindful living. They should inspire us all.

Mindfulness is more than just a buzzword on the blogs of health gurus… and cats are the original experts, according to Aimee Malpass.

Aimee, who works as a feline behaviorist, says we can learn a lot from our furry friends.

“Cats show us how to take it easy, she says. “to only do what we can do, to take naps and live in the moment. My own cats and the ones I work with have kept my head above water so many times: they are the kings and queens of mindfulness.

Aimee Malpass.

Aimee became interested in the field of animal behavior while training as a vet nurse. She saw many animals with challenging issues, and was required to assist with putting a cat to sleep due to its behavior. She was heartbroken over what she had witnessed.

“I didn’t want to see cats die for being cats. I felt so powerless to help. I saw the problem, but I didn’t realize there was a solution until I discovered the TV show, My Cat From Hell. By that point I was having issues with one of my own cats. The vet prescribed antidepressants, but nothing helped She basically just sat in the corner all day. So I asked if there were any animal behaviorists I could contact for help, but none of the staff knew of anyone. I was on my own. I realized then there was a need.”

At that point, Aimee enrolled in a Bachelor of Science, majoring in Animal Behavior, and started working with problem animals soon after she graduated.

“[Cats] are the kings and queens of mindfulness.”

Aimee’s work allows her to be flexible, which is necessary for her own health. After suffering mysterious pain and fatigue for close to six years, she was finally diagnosed with Crohn’s Disease, an inflammatory bowel disorder, in 2015. Unfortunately, by that point three quarters of her large bowel was ulcerated and inflamed, and use of the chemotherapy drugs Remicade and Methotrexate have become necessary to help keep the disease under control. The symptoms are persistent and unpredictable, so running her own business allows Aimee to fit her job around her abilities. And working with cats has taught her about looking after herself.

“I think watching a cat sleep in the sun, chest slowly rising and falling as they do nothing else but live in that moment of total bliss and relaxation: that’s something we should all aspire to. If we all took it as easy as our cats, we’d have a better time!”

Aimee says the nature of the work is a blessing in disguise in more ways than one. Her day-to-day job involves going into people’s homes to work with them and their animals, and the hours can be modified depending on her own wellness.

“The job tends to be piecemeal, which actually works well. Whether it’s doing behavioral consultations or caring for cats, I never have to go to a place and stay there for 8 hours a day, which is a thing I would really struggle with, especially if I’m having a bad flare up. Having a job that is only a couple of hours a day in which I get to do something that is not highly stressful really helps!”

As part of her job, Aimee helps owners learn to understand their cats’ needs.

She says a typical day might involve assessing one client’s needs. She begins with the owners, asking them lots of questions about their cats and how they act, both their normal behavior, and what the problem behavior might be. A lot of the time, she can track a cat’s behavior issue to their environment, rather than something within the animal itself.

“That means it’s more about modifying the environment and letting cats be cats rather than “training” like you would do with a dog, although training cats is entirely possible too!”

Assessing the cat involves watching how it behaves, how it interacts with its owners, and what’s going on in its environment. Aimee then makes initial suggestions of what could be causing the issue, which is often something like inappropriate urination or unpredictable aggression.

Once that meeting is over, Aimee heads out to write up a full report for the client. As well as the behavioral consultations, she looks after cats while their owners are on holiday, so her day will often consist of a few other necessary pitstops for food and cuddles.

“I think watching a cat sleep in the sun, chest slowly rising and falling as they do nothing else but live in that moment of total bliss and relaxation: that’s something we should all aspire to.”

At home, Aimee has three cats of her own to keep her company.

“They honestly keep my head above water sometimes with their gentle but very loud purrs. The brothers, Tobi and Nimbus, are Burmillas–part Burmese, part Chinchilla Persian — are very affectionate and demand a lot of my love, which is the best feeling when you’re sick and not really feeling like you’re worth much. I know they couldn’t live without me and I couldn’t live without them, as dramatic as it sounds. The girl is Bobbit, she has a sad story in that her tail was burned off when she was a 4 month old kitten, so it had to be amputated. She has a lot of behavioral problems because of this and she can be very stressed and is very wary of people. I have made so much progress with her though, and she is a very cuddly cat now.”

Aimee playing with a client.

When Aimee is having the sort of sick day that keeps her at home with the cats, she likes to play video games, and she finds a creative outlet in cosplay, making costumes of the characters she enjoys. She doesn’t often get the chance to wear what she makes, but says the process of researching and making a costume is very cathartic.

But her true love is the cats, and her work with them and their owners. She says the process of teaching people about how cats operate is deeply rewarding.

“It’s great when you explain to someone why their cat is doing a behavior that they don’t like, and showing them that it’s not out of malice or that their cat doesn’t like them. It’s great when you see the lightbulb go on in their head when they realize that their cat is scratching their couch because of an instinctual need and not because they are purposefully wanting to be annoying.

The most rewarding part though is knowing that I’ve helped these cats, and there is one less being put to sleep or rehomed because their owners failed to understand the behaviour.”

As for mindfulness, Aimee recommends taking a leaf out of your cat’s book.

“They’re always very much in the moment, focused on one things, whether it’s food or a toy or having a real good nap. We should all take care of ourselves that way.”

Chronic Illness

How To Have Great Vacations When You’re Chronically Ill

Because let's face it: people who are dealing with a health condition probably deserve a good vacation more than anyone.

Since her diagnosis 4 years ago with Crohn’s disease and Chronic Fatigue Syndrome, my mother and I haven’t had a vacation together. Our regular twice yearly trips to London—one of our favorite city breaks —have had to be put on hold as we adjusted to the daily realities of her illness, including her limitations and how to work with her new dietary needs.

Until now. With the arrival of the smash Broadway musical, Hamilton, to the London Victoria Palace Theater, we decided to finally arrange a trip back to the City. After all, when two people who don’t normally enjoy musicals find themselves captivated by a soundtrack for two years straight, it seems worth the effort to travel a few hundred miles to see the show for real.

The point of a vacation, of course, is to take a break from your daily routine. When you’re chronically ill, though, you can’t just switch it off for two weeks. So as we plan our trip, we do so with full knowledge that, this time, there will be things my mother can no longer do.

But while there may be new hurdles and challenges to overcome, the trip can still be very rewarding, providing we plan accordingly. Here’s some of what we’ve learned as we plan so far.

Choose your destination wisely

When you’re planning a vacation with chronic illness, think honestly about where you would like to go, and whether it’s achievable. You’re looking for a destination that hits that sweet spot between ‘fun’ and ‘practical’. It’s not weakness to accept that there are certain places you might not be able to go. A long hiking trip is no use if you have mobility issues, while a foodie excursion will be limiting if you have specific dietary needs. Plan accordingly. Consider things like how weather or temperature may affect you, or whether you’ll be able to get satisfactory care locally if something goes wrong.

If you’re traveling with someone, discuss your limitations with them.

Because my father grew up in London, we’ve been visiting the city for most of my life. We love to shop, and walking through the City conjures up memories of my childhood for my mother and me. It’s also only 3 hours away from our home in South Wales, meaning we won’t be too far geographically if she has any health issues. It’s the perfect ‘first trip’ after her diagnosis.

Likewise, if you’re traveling with someone, discuss your limitations with them. My mother was worried about the journey as she suffers from claustrophobia and didn’t want to feel trapped, so we’ve opted to drive rather than take a train to London. It’s a little more effort for me as the driver, but it means we can stop frequently if she needs a rest or some time out.

Pack smart

Make sure to pack what you can ahead of time. It’s likely to be a tiring process so avoid leaving things to the last minute. It also gives you time to consider anything extra you need to purchase or arrange. Items like a doctor’s certificate or note can be useful for getting care abroad, but also make sure to think of creature comforts like a favorite blanket to keep you warm, or make you feel more at home. If there’s going to be a lot of downtime, a tablet is great for Netflix rather than being restricted to hotel TV.

If you’re taking any of your meds or supplements on board a plane, make sure they’re clearly labeled with what they are

Consider using a pill organizer box to arrange your medications for each day of your trip. When you’re away from your daily routine, it’s very easy to forget to take your meds even if you’re normally very organized. Set an alarm on your phone to be doubly sure that you never forget to take them at the relevant time of day. If fatigue is an issue, like with my mom, it’s even easier to forget out of tiredness. An alarm reduces that risk. (Alternatively, you could also subscribe to a service like PillPack, which prepackages your medications by the dose and ships them directly to you.) (Disclaimer: Folks is sponsored by PillPack.)

If you’re taking any of your meds or supplements on board a plane, make sure they’re clearly labeled with what they are, along with your name. Take them on your carry-on luggage so there’s no risk of losing them if your luggage is delayed.

Book ahead

If you’re planning a trip that’s focusing on a specific event such as a shopping trip or attending a concert, make sure to book your hotel as close to the location as you can afford. and are great options for booking, allowing you to enter an address and view hotels nearby. After you’ve participated in the activity, you’re likely going to be tired, especially if you have a chronic illness. You want to be able to return to your hotel room fairly quickly. If visiting a city, a central location is ideal if you want to rest up for a couple of hours before heading back out.

Pre-Crohn’s, my mother and I would choose a hotel just outside of London and take public transport in. While that’s a cheaper option, this time around, we’re paying the extra to be nearer to the action. If she’s going to be out late, we want it to be spent in fun, not in transit.

Consider any additional requirements you might need and let the hotel staff know ahead of time. Do you need wheelchair access in your room? Or a walk-in shower? Both and allow you to filter results by accessibility features. It’s still worth informing the hotel at the time of booking to guarantee you get the assistance you need. We’re prioritizing somewhere that has elevator access. The last thing we need after hours of traveling is my mom struggling up multiple flights of stairs.

Finally, if you’re planning on dining in your hotel, this is also the ideal time to make them aware of your dietary needs. Outside of your hotel, sites like AllergyEats are great for looking up allergy-friendly restaurants. Elsewhere, a quick Google for a restaurant you’re considering will often provide information on how well they cater for specific diets. Restaurant chains are particularly efficient at offering everything you could need to know.

Plan, plan, plan

Everybody’s energy levels are finite, but with a chronic illness, your batteries recharge slower. Take that into account to to use your energy to the fullest.

Plan some rest days amongst your trip.. Ideally, have a rest day the first day you arrive at your location, so you’re well-rested to go out the next day.  If financially possible, extend your trip by a few days so you can take it easy as needed without giving any time up for shopping and sightseeing. Reading a book by the pool or indulging in a spa day can restore you a little for the next day of sightseeing.

Everybody’s energy levels are finite, but with a chronic illness, your batteries recharge slower.

Think about what’s essential for you to achieve on your trip. Is there a walk you particularly want to take? A show you desperately want to attend? Place that at the top of your list then write up everything else that you’d like to do. Prepare a ‘worst case scenario’ plan of action alongside a ‘best case’ list. For our list, we’ve made Hamilton our biggest priority, with short shopping trips to Selfridge’s or Harrod’s being next on the list. Everything else is optional.

Check out services like Google Street View to see exactly where you’re going, and whether a location is accessible. Apps like AccessNow crowdsource information to determine places that are accessible for wheelchair users. For those with mobility issues that don’t require a wheelchair, it’s great to be able to know exactly where a seat or bench is along a public walkway. Use apps like Uber or Lyft to arrange rides ahead of notice so you don’t have to rely on hailing a cab the old fashioned way. It might cost a little more than using public transport, but it’s worth the extra few bucks if you’re able to enjoy your trip.

Eat well

Many chronic ailments also require you to follow specific diets Luckily, most restaurants and eateries can cater to specific allergies and diets, but you still should do research beforehand. Don’t be afraid to email or call to double check a restaurant can meet your needs. Check out potential places to visit on Yelp or TripAdvisor, and see if any customers with dietary needs have had issues before. We’re not booking reservations ahead of time in case my mother’s Crohn’s is acting up, but we still have a list of options prepared of places that we know can cater to her gluten-free diet, if needed.

If you’re traveling to somewhere that involves a different language, brush up on learning key words such as what dairy or gluten are in that country’s language. Before your trip, use Duolingo, a language app, to learn the basics for food items. Make index cards that explain your allergies in the relevant language, saving you the hassle of learning correct pronunciation. Google Translate will help you in a jam while you’re there, but don’t rely on it as it’s imperfect.

If you’re able to, take some snacks with you. These can sustain you while you’re walking around, and if you need to eat and can’t find a place that caters to your needs, a bag full of snacks can be a life saver, especially for women like my mom, who weakens quickly if she doesn’t eat regularly.

Don’t put too much pressure on yourself

My mom is already feeling a little sad that this trip won’t be as jam-packed with sights and destinations as previous visits. We’re probably not going to be able to be as active as we have been in the past. But that’s okay. The important thing is: she’s still on vacation. Sure, the trip might not go perfectly to plan, and sure, it might be bittersweet at times. But she’s made it, and that’s a big step.

The important thing is: she’s still on vacation.

Feeling obliged to get everything possible out of an experience can make things more stressful than they should be. Just enjoy the ride. Take pleasure in the little things. Like me and my mom. We’re going to see our favorite city in the world from a whole new perspective. That’s exciting no matter how you cut it.

Chronic Illness Mental Health

How Crohn’s and Depression Pushed This Man Into Law School

After chronic illness caused him to spiral into depression, JD Ward is studying to help people like him from falling between the system's cracks.

Before being diagnosed with Crohn’s Disease at the age of 18, and subsequently suffering a blood infection that almost claimed his life, JD Ward had never experienced anxiety or depression. But he says that physical and mental health are inextricably linked. And he wants to use his experiences to help others with mental illness.

In the years before his diagnosis, JD was part of more than one band, routinely traveling and playing in front of crowds. Having been given a guitar at the age of 12, he found in music an emotional outlet as well as a part-time job. Even though he describes himself as an antisocial introvert, being on stage never bothered him.

J.D. Ward.

When he began to get symptoms of a mysterious illness at 17, JD left the music circuit and returned to his family home. He was soon diagnosed with Crohn’s Disease, and put on medication to help manage the illness.

But all would not be well. In 2012, the medicine reacted with a virus and caused the life-threatening blood disease Hemophagocytic Lymphohistiocytosis.

“For all intents and purposes, HLH is like cancer,” says JD, who, near death, spent time in intensive care receiving multiple surgeries and cancer treatments. “It is in remission now, but it could come back.”

While being treated, JD had to give up his job and was given a colostomy bag for eight months. He struggled to adapt to his new life, and eventually made the decision to go back to school.

Initially, he signed up for pre-med. He says the idea behind studying medicine was that he wanted to be the one in the doctor’s chair, rather than the patient.

After a year, he decided to change direction and chose a double major in law and psychology. He hopes to use the combination to help people with mental illness, especially those within the legal system.

“It can be hard to find people who can empathize with physical and mental illness, when most people haven’t experienced it. So they don’t know how to respond.”

It took several years for JD to get his own diagnosis of anxiety and depression. Even though his father works as forensic mental health nurse, he felt unable to talk about what he was experiencing.

“I knew if I went and talked to Dad, he’d know what to do, but I still couldn’t do it. But it was him that helped me get diagnosed with depression, when I was in the hospital recently.”

“Once I’d accepted that I had a mental illness and I needed to get help, it was a lot easier to keep the conversation going.”

“Once I’d accepted that I had a mental illness and I needed to get help, it was a lot easier to keep the conversation going,:

Living at home while he’s studying means JD can have these conversations whenever he needs to. His father and his brother both work in the same criminal mental health unit, so JD’s interest in the intersection of law and psychology seems to run in the family. He says it felt like a natural pathway.

“I’m not sure exactly what job I’m going to have, but I want to help ensure people with mental illness retain their human rights within the legal system. People with mental health difficulties are often underrepresented and can slip through the cracks.

For example, if you’ve been contained under [New Zealand’s] Mental Health Act you lose your autonomy because of the risk to yourself or others, but it’s so important we make sure people are not devalued, that their rights are still upheld when that happens.”

JD has three years left before he will graduate with a Bachelor’s Degree in Law and a Bachelor’s Degree in Science and Psychology.

His Crohn’s Disease, while controlled more than ever before with the chemotherapy medications Remicade and Methotrexate, is an “ongoing battle.” As well as having low energy and appetite, he is on the waiting list for surgery on a fistula: a tract in his gut that leaks and never heals.

A typical day for JD means getting to the gym, getting to class, and getting home to rest. Those things will all be impacted by how many bathroom trips he might need, how much food he can eat during that day – and whether or not his mental health is playing ball. If it’s a bad day, he may not be able to do any of those things.

He also still plays guitar, and says it’s an essential hobby that helps keep him grounded, as well as an emotional outlet.

Now at law school, JD wants to practice law to defend the rights of those with mental health issues.

“I get pretty angry sometimes, music helps with that. I’ve come to terms with my illness, but sometimes a doctor might say certain things, and it gets to me.

“It’s unhealthy to deny yourself that right to be angry. I spent a long time not accepting the full extent of what I’d been going through, it became really hard to reconcile everything. Once you do accept it and you get angry and upset – then you can let that go and move forward.”

It’s unhealthy to deny yourself that right to be angry… Once you do accept it and you get angry and upset – then you can let that go and move forward.”

The music is another thing he shares with his father, who has been playing since before he was born. JD has put some of his own recordings online, but says that can make him feel pretty anxious.

“It’s quite a vulnerable thing to do, and you have the anxiety about criticism or judgment over what you’re sharing.

“You have to write crap before you get to the gold. And you don’t want to, of course, you’ve got the anxiety of how people might react to that.”

When he thinks about his life in ten years, JD says he hopes he’s in a position where he’s helping make people’s lives better.

“In this day and age, mental health is still in the background, so we need more people bringing it to the forefront, and protecting the rights of people while we do it.”

Chronic Illness

Putting A Funny Face On Crohn’s Disease

Samantha Irby has made a career out of being witty about the unmentionable: what happens when you have problems on the toilet.

The pain was so severe that Samantha Irby was convinced she was having a miscarriage. Except for that pain, though, she had no reason to believe she was pregnant.  After a lifetime of having what she assumed was just a weak stomach, something felt different.  “I was kneeling on the floor in the bathroom and I was like ‘This is not a normal pain,’’ Irby, now 37, says of her 2005 episode. “I looked down and my stomach was distended, it was hot to the touch.”

A scan at the ER revealed that her intestines had swollen and twisted into a pretzel shape. After a two-week hospital stay, during which she had a capsule endoscopy (“You swallow a giant plastic pill that has a camera in it. It moves through until you finally poop the camera out. At the time I was too sick and scared to acknowledge how cool that is.”), she was given an indirect diagnosis of Crohn’s disease, an inflammatory bowel disease that is particularly rare among black people.

It took years of experimentation with lifestyle changes and drugs to get to remission, but the experience had a creative upside. A few years after her diagnosis, Irby started a blog called Bitches Gotta Eat, where she matter-of-factly detailed her bathroom-intensive life along with entries about friendship, dating, and sex. “I got messages from people who were like: ‘Thanks for putting a funny face on a thing that is not always funny.’ Once I started getting positive feedback I thought, ‘I can write about this more.’”

Since starting her blog, Irby’s has since published two books of essays, 2017 New York Times bestseller We Are Never Meeting in Real Life as well as Meaty, which is getting re-released by Random House in April. Irby is also working with TV writers Jessi Klein and Abbi Jacobsen turning Meaty into a comedy series for FX. Now living a quiet life in Kalamazoo writing and step-mothering,  Irby spoke with Folks about the practical daily matters of Crohn’s and the doctor who made a difference in her life (even though she originally told him he was too cute to treat her.)

Irby is the author of We Are Never Meeting In Real Life and Meaty

Tell us a little about your Crohn’s disease. What are your triggers?

Rainy days—my body feels like it’s in traction sometimes. Super soft cheeses: they’re so delicious but I know that’s oing to be a problem. And, what will sometimes give me the hardest time is super healthy food like brown rice. I can’t. It just comes out looking the exact same and with a vengeance. If I sit and eat a bunch of carrots and hummus, which is delicious, I guaranteed I’m going to be in trouble later. That’s what’s so funny—sometimes when people catch wind [about your chronic illness] they want to email you all this unfounded advice. They’re trying to tell me what to eat and I’m like, “Great I get it,” but sometimes the only thing that will have the smooth ride all the way through is white bread, bananas and pasta.

You have joint problems an addition to the Crohn’s too, don’t you?

Yeah, peripheral arthritis, which is a degenerative joint disease. When my Crohn’s is active, the joint pain is excruciating. It’s like insult to injury to have to sit on the toilet all the time and have your knees hurt.

Your wife was a reader of your site before you married her. Do you think that helped her understand what you were going through.?

I think that at least having a base knowledge of Crohn’s makes some of the conversations easier. Like, I know you know I have diarrhea but you also need to know that if I need something from downstairs you might need to get it while I try to get my knees and joints together. So my blog gave her a good blueprint of what life together might be like.

Who were some doctors or practitioners who made a difference in your life? What did they do?

When I first went to the ER in 2005, I had to sleep with this Nasogastric tub up my nose.  I was totally disoriented and had no idea what was up. The next morning, my super hot GI doctor came in and said, “Hey, I’m Dr. Mehta, it’s nice to meet you.” I was like: “No, you can’t be my doctor. I can’t be talking to you about my butthole!” He laughed and we hit it off.He really stuck to my intestines and not my myriad other problems.

It’s hard to go to the doctor as a fat person and have them try to treat your weight rather than help you.

It’s hard to go to the doctor as a fat person and have them try to treat your weight rather than help you. I went to the doctor for an ear infection a few months ago and I got a referral to the new bariatric clinic, and I was like “Okay…but can you just work on my ears?” Both he and Lori Jackson, my GP who it took me too long to find, were great because they stayed focus: “This is the problem we’re dealing with and this is what we’re going to fix.”

It’s so refreshing as a patient dealing with a long term chronic thing to have a doctor who wasn’t trying to shame me about my weight the time, especially when their job is to look into my mouth and butt all the time.

What resources do you wish you had when you were diagnosed that you didn’t?

I wish I had just known other people who were dealing with Crohn’s. That was part of my impetus to write about it. It’s one thing to meet up with a bunch of old men who have Crohn’s, but it would have been nice to know there were so groups for black girls with IBD. And it turns out there are—they’ve reached out to me, they’ve emailed me.

What advice would you give to other young adult women who are recently diagnosed?

Find a doctor you trust. Listen to what your doctor says and what your body says. Take other peoples’ advice with a grain of salt. Especially in the Internet age, as soon as you tell somebody you have something going on, the first thing they want to do is regurgitate some bullshit that they read somewhere. With gut disease, people don’t think of them as being real, so they say things like: “You just have a weak stomach, you just need to drink apple cider vinegar every morning.” Don’t listen to anybody else’s armchair advice. If it feels good and works for you, great, but don’t feel pressure to listen to that one person on Facebook who thinks he or she knows a lot about organic groceries.

This interview was edited and condensed for publication.

Chronic Illness Diabetes Mental Health

From AIDS to Zika, New Books Teach Kids About Conditions

Whether Crohn's disease, lactose intolerance, or childhood depression, a growing number of children books feature diseases and ailments as their subjects.

In her picture book Even Superheroes Get Diabetes, author Sue Ganz-Schmitt tells the story of a boy named Kelvin who hates the constant fingers pricks and shots required by his diabetes. But with the help of a (medically accurate) insulin pump and a mysterious doctor, he becomes Super K, flying around the world with the doctor delivering insulin to other kids with diabetes.

Ganz-Schmitt wrote and subsequently self-published the story in 2007 after watching one of the families in her kids’ playgroup cope with type 1 diabetes. The son, Kaden Kessel, was weeks away from his third birthday when the family got the news. Suddenly his parents, who also had a newborn, had to constantly monitor his blood sugar to keep him healthy.

Sue Ganz-Schmidt, author of Even Superheroes Get Diabetes.

When Ganz-Schmitt searched for a story about childhood diabetes, she found picture books that offered comfort to families but nothing that went beyond comfort to actually inspire them. After attending events with JDRF, an organization that funds type 1 diabetes research, Ganz-Schmitt says she was struck by how empowered the kids were in speaking about diabetes, almost like real-life superheroes.

“When I first saw it, I was kind of in awe because … even though the kid becomes a superhero, he looks like me in the book and it’s based off of my story,” says Kessel, who’s now 17. The book was so inspiring to Kessel that he used it in sixth grade to become a sort of diabetic superhero himself, bringing it into school to defend a young classmate from being bullied for his diabetes in class.

While most picture books introduce kids to story and language, perhaps imparting a few feel-good lessons along the way, ones about medical conditions serve a deeper purpose.

While most picture books introduce kids to story and language, perhaps imparting a few feel-good lessons along the way, ones about medical conditions serve a deeper purpose: Helping kids with a medical diagnosis understand what’s happening to their bodies or educating young readers about medical conditions a relative, friend or classmate might have. Not to mention teaching empathy.

Cover of My Grandpa Had A Stroke.

Some of these books have such niche appeal that they’re self-published. However, the American Psychological Association has a publishing imprint called Magination Press that specifically publishes fiction and nonfiction books for kids and teens around mental health issues, including medical diagnosis and also topics like mindfulness and learning disabilities.

“With any kind of physical illness or mental health issue, there’s an emotional, social and mental component to that,” says Kristine Enderle, director of Magination Press. Its medical-themed picture books include Danny and the Blue Cloud: Coping with Childhood Depression (by James M. Foley, DEd, 2016) about a bear learning “Feel-Good Rules” for dealing with depression, and My Grandpa Had a Stroke (by Dori Hillestad Butler, 2007) about a little boy who must learn to adapt after his grandfather has a stroke.

Danny and the Blue Cloud, a book that teaches kids about depression.

“We try to empower kids,” Enderle says. “We never really want to tell them what to do or how to feel or how to fix it, but we hopefully provide them with enough information and context that’s all rooted in evidence-based psychology.” To that end, most Magination Press titles are written by child psychologists, counselors or other medical professionals and include a note to parents on how to talk to kids about these issues and organizations they can tap for additional resources.

“We feel like there’s great power in this information and understanding the psychological and emotional side of things,” Enderle adds.

Frank Sileo is a New Jersey-based psychologist who’s written several picture books for Magination Press. He got the idea for his first picture book (published by a different publisher, who’s now defunct) from doing biblio-therapy with his young patients. “[With biblio-therapy] you read a book to a child about a particular problem, talk about the problem, and it validates their thoughts and feelings,” he explains.

Toilet Paper Flowers, a book about Crohn’s Disease.

When patients asked for a book about Crohn’s disease, Sileo couldn’t find one. Instead, since Sileo suffers from Crohn’s himself, he decided to write a picture book and Toilet Paper Flowers: A Story for Children about Crohn’s Disease was born. In it, a little girl with Crohn’s disease spends so much time in the bathroom, she makes toilet paper flowers and shares them with her friend.

Sileo’s second book was inspired by a patient who was bullied for being allergic to regular daily milk, so Hold the Cheese Please! A Story for Children about Lactose Intolerance. The story teaches kids about lactose intolerance (not to be confused with an allergy, as Sileo points out) and encourages them to accept each other’s differences. “It’s hard to be a kid and not have those things [like milk],” Sileo says, peppering his speech with medical puns.

Ganz-Schmitt’s second book, The Princess and the Peanut: A Royally Allergic Tale, also tackles food allergies. When she self-published the book in 2011, some parents erroneously believed that food allergies were made up (like Santa Claus or the Easter Bunny, Ganz-Schmitt quips) and didn’t understand their severity. “I was just so astounded what those families [with serious food allergies] had to go through,” she says. “Every bite was walking into a minefield for them.”

Full cover of Even Superheroes Get Diabetes

Ganz-Schmitt hoped by that educating children about food allergies, even those who didn’t have allergies themselves, those children will look out for siblings, friends or classmates who could suffer serious consequences from exposure to allergens. “‘Oh no, Mom, you can’t put peanuts in those cookies!’” she says. “They get it immediately and they really join the community of people who care for these children.”

As for Kessel–the original Super K–he’s now the JDRF walk ambassador for the Los Angeles Walk and is working to get the Latino community to join the walk and gain better access to medical care, similar to how his picture book counterpart helped others with diabetes.

He went through a rough period around age eight or nine where he wondered why he’d gotten a disease that doesn’t run in his family. Now he takes a more philosophical approach, pointing that the perseverance people with diabetics learn helps many of them excel in elite sports and business. “It’s hard and it sucks sometimes and none of my friends have it–all of that is true–but I feel like it’s been a blessing in disguise because the things I have learned from it,” he says.

And it all started with a book. For further reading with your kids on living with conditions, we suggest starting with these:

  •    AIDS: “The Gathering Tree” by Larry Loyie with Constance Brissenden, illustrated by Heather D. Holman, Theytus Books, 2006
  •    Alzheimer’s disease:Always My Grandpa: A Story for Children About Alzheimer’s Diseaseby Linda Scacco, PhD, illustrated by Nicole Wong, Magination Press, 2005
  •    Autism: “All My Stripes: A Story for Children with Autism,” by Shaina Rudolph and Danielle Royer, illustrated by Jennifer Zivoin, Magination Press, 2015
  •    Cancer:When Billy Went Bald” by Julie C. Morse, illustrated by Alexandra Higgins, Skyscraper Press, 2012
  •    Crohn’s disease: “Toilet Paper Flowers: A Story for Children About Crohn’s Disease” by Frank J. Sileo, PhD, illustrated by Martha Gradisher, Health Press (NA), 2005
  •    Depression: “Danny and the Blue Cloud: Coping with Childhood Depression” by James M. Foley, DEd, illustrated by Shirley Ng-Benitez, Magination Press, 2016
  •    Diabetes: “Even Superheroes Get Diabetes” by Sue Ganz-Schmitt, illustrated by Micah Chambers-Goldberg, Dog Ear Publishing, 2007
  •    Down’s syndrome:47 Strings: Tessa’s Special Code,” by Becky Carey; illustrated by Bonnie Leick, Little Creek Press, 2015
  •    Food allergies: “The Bugabees: Friends with Food Allergies” by Amy Recob, illustrated by 64 Colors, Beaver’s Pond Press, 2009
  •    Food intolerances:Woolfred Cannot Eat Dandelions: A Tale of Being True to Your Tummy” by Claudine Crangle, Magination Press, 2014
  •    Lactose intolerance: “Hold the Cheese Please! A Story for Children about Lactose Intolerance” by Frank J. Sileo, PhD, illustrated by Martha Gradisher, Health Press (NA), 2009
  •    Leukemia: “Chemo to the Rescue: A Children’s Book About Leukemia” by mother-daughter duo Mary Brent and Caitlin Knutsson, Authorhouse UK, 2008
  •    Heart defect: “Riley’s Heart Machine” by Lori M. Jones, illustrated by Julie Hammond, Guardian Angel Publishing, 2012
  •    Post-traumatic stress disorder (PTSD): “Why is Dad so Mad?” by Seth Kastle, illustrated by Karissa Gonzalez-Othon and “Why is Mom so Mad?” by Seth Kastle and Julia Kastle, illustrated by Karissa Gonzalez-Othon, both Tall Tale Press, 2015.
  •  Stroke: “My Grandpa Had a Stroke” by Dori Hillestad Butler, illustrated by Nicole Wong, Magination Press, 2007
Chronic Illness Immune & Autoimmune Diseases

Feminism, Weight Lifting, and Crohn’s Disease

Two years ago, Kate Montgomery was ashamed of her looks and could barely get out of bed. Now, she's the strongest and sexiest badass at the gym.

Wearing a t-shirt that says Wild Feminist, a massive smile, and a tiny silver dumbbell around her neck proclaiming “Me vs Me,” Kate Montgomery is no one’s picture of chronic illness.

The 34-year old was diagnosed with Crohn’s Disease at 22. The necklace is a description of the power play between herself and her body; a fight she’s come close to losing multiple times.

Kate has spent much  of the last decade in the  hospital, suffering through dangerous infections, four surgeries, and dangerous weight loss.

Up until May 2015, she weighed around 92 pounds. Unable to eat, she was fed through a tube directly into her chest. She couldn’t get out of bed unassisted.

The Kate of today is a different story.

Kate Montgomery.

Two years ago, her doctors made a devastating decision that probably saved her life: her large intestine needed to be removed.

Having already experienced a temporary ileostomy–where her bowel was rerouted and attached to her stomach wall so that waste emptied into a colostomy bag–Kate was shattered by the news.

While the procedure removed five feet of intestine from her body, it essentially removed her disease. But she says it also shredded her self-esteem.

“I thought no one would ever be attracted to me again when they found out about it. I was ashamed of it, it just mortified me. I would cry just thinking about it.”

But now, Kate says she’s the healthiest she’s ever been, and the ileostomy no longer upsets her as it once did.

“It’s strange to think about feeling bad about it, because I’ve done a huge amount of work on being okay with me, and I don’t really care anymore. I’ll tell people and explain it.”

The years she spent battling the disease have made her strong both physically and mentally. Under advice from her physician, she started to weight train in order to fix her bone density.

“The medication I was on affected my bone density, and overall I was left very weak,” she says. I’d never weight trained before so I didn’t know what I was doing! But I love it now.”

“Regularly pushing myself in the gym doesn’t feel that hard, really. I know how mentally strong I am from surviving months in hospital and years of being bedridden, and constant pain. After my last surgery they took away my epidural really early but hadn’t added extra pain relief to replace it, so I could feel the full force of having been cut open days before. I had to get through about eight hours counting in 5 second intervals, like get through this five seconds, then the next five. Knowing I survived that means I’m already confident I can handle anything in the gym. Nothing will ever will ever be worse than that day.”

Now, Kate says she keeps hitting new Personal Bests, seemingly every week.

“My goal was to deadlift 100kg (220 pounds), which I’ve just done!” she says. “Next up is double my weight, which is about 126kg (227lb). Considering at one point I couldn’t lift myself out of bed, it’s amazing to be able to push myself now.” 

Kate says the strength that comes from weight training comes first, but being able to look in the mirror and like what she sees is also hugely important.  

Why should I have to feel like this illness that has left me so scarred–figuratively and literally–makes me any less beautiful or worthy than anyone else?

“Having positive self-image is constant work. I’m very lucky in that I became well enough to work out and lifting weights has changed my body, in terms of my strength and my shape,” she says. “But I definitely don’t look like a Victoria’s Secret model – I have broad shoulders, strong arms and narrow hips, and I’ve always been self-conscious of that. It’s just been a process of deciding to not feel bad about that anymore and own how I look and constantly correcting my thoughts when I feel bad or say mean things to myself.”

“I got sick of being ashamed. Sick of feeling like there was something wrong with how I looked. I decided that needed to change. Last year, I just decided to stop feeling like that. It’s not an overnight process, but I’ve worked at it every day. Because why should I have to feel like this illness that has left me so scarred – figuratively and literally – makes me any less beautiful or worthy than anyone else?”

“I got sick of being ashamed. Sick of feeling like there was something wrong with how I looked.”

Kate says being a feminist also played a big part in making these changes.

“Part of feminism is being body-positive, about women of all shapes and sizes. And it’s hard to be an advocate for that if you’re really not positive about your own,” she says. “One of the biggest blessings of being sick and recovering is not giving a fuck how much space my body takes up anymore. I used to feel bad about being taller and broader than most of my friends; women are taught by society to take up as little space as possible. After you’ve literally taken up as little space as your skeleton allows, taking up more space feels defiant. I love it. It’s a blessing to learn you’re entitled to take up exactly as much space as you need to in this world, with your size, or your voice.”

Kate’s going back to school this year to study psychology. She wants to be able to share the knowledge she’s gained from being sick, and to put that into practice helping others with chronic illness.

“I think my experience will make me better able to help and relate to people,” she says.

One of the biggest blessings of being sick and recovering is not giving a $%@! how much space my body takes up anymore.

“Chronic illness isn’t a normal part of life and I believe everyone who has it would benefit from professional help to cope with it, mentally. My therapist has changed my life in terms of my ability to accept and cope with what Crohn’s has thrown at me, from the day to day stuff, to the big things like hospital and surgery. Having the temporary ileostomy previously meant I could directly compare how shattered that left me, with how well I’ve coped now, and the major difference is the therapy I’ve had. I’ve done all the work, and I’ve worked damn hard. I want to be able to do that for other people.”

Kate says she’s now in a ‘weird limbo’ where she’s not really sick anymore. But she constantly reminds herself how hard she’s worked to earn her health.

“I don’t have pain anymore, so I feel weird sometimes saying I have a chronic illness or putting myself in with people who are still grinding through their days, but I’m also not well, and I have to be much more careful about my health than ‘normal people’. But I feel guilty talking to other sick people sometimes, because I’m so much better. I have to remind myself that I deserve to enjoy being better, that I’ve earned it, and that I’ve sacrificed and lost a lot.

I’m allowed to just be grateful and happy that I’m here now.”

Chronic Illness

The Kid Who Couldn’t Eat

A year without eating only made John Capecelatro a better chef... and a better friend.

Still boy-faced despite his luxuriant beard, John Capecelatro will tell anyone who listens he has two passions: coding and cooking.

As a product engineer for PillPack, the home pharmacy healthcare startup, John spends his days serenely lost in a cathode maze of code, usually with headphones on to shutout the world outside. (Disclaimer: Folks is owned by PillPack.) But it’s when you watch him in the kitchen, whisking sauces and flipping sautés with flair, that you suspect that maybe John was really born to cook, not code…. a theory borne out by the fact that he is the son of a classically-trained chef.


John practices his knife skills.

Ask John, though, and he says that both cooking and coding satisfy the same part of his brain. Whether programming a new feature for PillPack customers, or grilling some barbecue for his friends, “there’s a very real relationship between how hard you work and what you get in the end,” John says. “They’re both really very meditative to me.”

Still, even John has to admit that cooking, not coding, is slightly more precious to him. Programming’s a solitary act – just you, a workstation window, and the cold binary logic of the machine. Cooking, though, is inherently social, and you only need to hear John’s laugh to know he’s a social guy.

“There’s just nothing I like more than cooking a big dinner and having beers with some friends,” John says.

That’s something most of us value, but in John’s case, there’s a special reason why he put so much stock in the sensuality and sociability of food. Throughout his life, there have been months at a time when John couldn’t eat food at all.

Getting Crohn’s

John has Crohn’s Disease, an inflammatory bowel disease that can cause abdominal pain, acute diarrhea, fever, and even skin rashes and arthritis. It’s more common than you’d think. About 3 people out of every thousand have Crohn’s Disease, with a surprisingly strong political representation including President Dwight D. Eisenhower, House representative Dennis Kucinich, and former mayor of Boston, Thomas Menino. Despite this, and his natural likability, John says he’s never really thought about a career in politics. But he has spent a long time dreaming about food, especially when his Crohn’s diagnosis required him to subsist without food for weeks on end.



It was a blissful summer of wake boarding and water skiing when John first showed symptoms of Crohn’s Disease. Only nine at the time, John was spending the months between third and fourth grade at his family’s lakeside cabin near the Adirondacks when he started having searing stomach pains. “It was very different from the typical third grader’s self-diagnosis of ‘I don’t feel good!’” remembers John. “I was spending a lot of time in pain on the toilet. And it was scary. As a kid, you have just so little context. You don’t know: is this just a stomach flu, or is something systemically wrong with you?”

A doctor soon confirmed the latter. Along with having Crohn’s Disease, John had a raging abscess infection that required surgery, and loads of pills. And then, for quite a few years, John’s Crohn’s Disease lay dormant. It didn’t really affect his life too much: he wasn’t known, for example, as the kid with Crohn’s Disease. “My friends knew, I think, but I never had this internal debate about whether I should tell people,” he says. “It had no physical symptoms, so it just never came up.”

A month before he started his junior year of high school, though–during yet another blissful lakeside summer in the Adirondacks–John’s Crohn’s Disease stopped being so considerate.

“I’d just learned to barefoot water ski, which involves the boat going extremely fast… people break bones all the time because that’s just how fast you’re going,” John recalls. Flying through the air and slamming hard against the water on his side, John didn’t break any bones, but he seemingly ruptured something. He had to be dragged back onto the boat; the agony almost made him pass out.

Even John's bike gear is covered in food references.

Even John’s bike gear is covered in food references.

A Year Without Eating

John’s never been quite sure if that incident caused, or merely exacerbated, the Crohn’s flare-up that he spent most of the next year fighting. At the very least, it wasn’t clear right away what was wrong. As the pain grew, and John grew weaker, his doctors spent the next few months trying to treat his Crohn’s with what had worked before: mostly Prednisone. John started shedding weight: between summer and winter, he lost 55 pounds. “There were times when I’d get on the scale at night, and see I’d lost a pound or two since the morning,” he says. “It was that rapid.”

By December, John and his family were so desperate for some kind of improvement, they flew out to visit a doctor in Cleveland who’d had some experimental success treating Crohn’s with bacteria. “He took one look at me, and said: ‘Bad news, this isn’t treatable by any course of medication.’”

Surgery followed surgery. The doctors removed a small infected loop of John’s bowel. One consequence of the surgery was that while his bowel healed, John couldn’t eat food. He got all of his nourishment delivered directly to his veins through TPN, a sort of nutrient slurry that he carried around in huge backpacks and which was pumped directly into his body through a PIC line. (On his arm, John still has a small constellation of scars, showing where the PIC line ran to his heart.)

Flipping some vegetables in the kitchen.

Flipping some vegetables in the kitchen.

Between his multiple surgeries, John went the better part of a year never eating anything at all. His longest streak was 74 days in a row: an eternity for a teenager. “Physically, you’re not hungry at all, so technically you’re fine,” he remembers. “But emotionally, you’re constantly starving, because there’s that dopamine-addled part of your brain, crying out for a hit of your favorite food.”

More than just the physical pleasure of eating, though, John says the hardest part of his year spent not being able to eat wasn’t the starvation… it was the loneliness. “If you think about it, so much of our life is structured around food: it just has a huge social component,” John says. “And that’s doubly true when you’re a teenager. So much of a high schooler’s social life is eating pizza, or pounding down wings.” And while John was lucky enough to have friends who didn’t ostracize him for being different, every empty plate set for him at a restaurant or at a family dinner was a reminder that he was missing out on something. That he “couldn’t participate in something that is just an intrinsic part of the human experience.”

Savoring Food Again

These days, John’s Crohn’s Disease is well managed. Asked if he has any dietary restrictions, he laughs. “I eat whatever the fuck I want!” (That said, he has a particular fondness for Sour Straws and Sour Patch Kids.)

John relaxes with a friend.

John relaxes with a beer and a friend.

But even so, John has never forgotten how intertwined food and friends are in the tapestry of his life. Which is why, when John’s not coding, he’s usually found in his kitchen or the backyard grill, surrounded by friends, frying up a plate of Nashville style hot chicken, smoking some pork shoulder, or whipping up some Utica style greens.

 With Crohn’s Disease, there’s always the possibility that, sometime in the near future, John might again be staring at an empty plate with every meal. To John, that just makes every meal cooked and shared with his friends all the more savory.

All photos by Jess Benjamin.

Chronic Illness

Crafting Through Chronic Illness

Untold numbers of people suffering chronic conditions are turning to Etsy to find purpose and a livelihood through illness.

Balancing a chronic illness and traditional employment isn’t easy. For those with an artistic streak, some turn to platforms like Etsy to create on their timeline and sell to a global audience.  

Lucy Blair measuring her hippos.

Lucy Blaire measuring her hippos.

In 2006, when Lucy Blaire was diagnosed with Crohn’s disease, she lived in Boston with her boyfriend (now husband), working full time as a seamstress. After her diagnosis, she continued working, but taking 22 or 23 pills a day made it a challenge.  

“The medication made me feel terrible, the disease made me feel terrible,” Blaire says. “Continuing to work on someone else’s schedule was nearly impossible.”

After trying several different medications, seeing several doctors and struggling through work, Blaire and her boyfriend moved to upstate New York to focus on her health and be closer to her family. “Everything was so new, you have to try a billion different things medication-wise until you find something that works for you,” she says.

Blaire found a new doctor in Albany, and her Crohn’s is now in remission. But instead of getting a full-time job, she opted for self-employment. After freelancing as a seamstress making custom drapes didn’t take off, she began making oilcloth makeup bags and eventually opened an Etsy shop called Lucy Blaire Creations.

Blaire also loves creating sewing patterns but found it hard to meet magazine deadlines now that she has two kids. When Etsy added digital downloads, she began selling patterns (this pattern for a stuffed hippo is her top seller) as a way to scale up her business. Etsy processes payment and emails the PDFs to customers, so Blaire doesn’t have to manage that process.

A look inside Blair's crafting studio.

A look inside Blair’s crafting studio.

She credits Etsy with giving her the flexibility she needs to take care of her kids and her health. “Having children or having a chronic disease, it doesn’t make working impossible but it makes working on somebody else’s schedule impossible,” she says. “To be able to run my own shop or take care of a digital download is just so freeing. Maybe today I feel good in the morning, so I can work on my own schedule.”

Katrina Isbill-Floyd, aka Bella McBride from McBride House in New Brunswick, Canada, can relate. Isbill-Floyd was diagnosed with fibromyalgia in her early twenties. She tried working as a botanist but found the travel and work to be overwhelming while also dealing with her chronic pain issues.

“Over the years I have fought this tooth and nail and have struggled to find a proper balance,” she says. “Because of this, working outside my home became more and more difficult so I needed a way to supplement our income and give myself a creative outlet. I’ve always wanted to have my own business and finally decided that time passes no matter what, so why not give it a try?”

Isbill-Floyd opened an Etsy shop selling needle-felted animals in 2009. “It still astounds me that you can take a clump of soft fluffy wool and with the manipulation of a single barbed needle you can create a 3D piece,” she says. “It’s very relaxing if you just let your mind drift and let the wool do the talking.”

Fortunately, muscle pain from her fibromyalgia doesn’t stop her from felting. “In fact, I find that if I don’t do it for a few days, my hands will begin to ache,” she says. “It’s such a soft gentle movement that it really seems to help with the pain.”

Isbill-Floyd also appreciates Etsy’s broad customer base. “In my small community there is no way I would have been able to sell what I was making, let alone have the energy to do so,” she says, “and therefore, would not have been able to have either the confidence or the skill coming from continual practice.” She’s now doing a few select shows a year and credits Etsy with giving her the confidence and practice to do so.

“I’ve never been sicker, but I’ve also never been happier,” Isbill-Floyd says. “My needle felting is what gets me up in the morning and gives me something to look forward to.”

I’ve never been sicker, but I’ve also never been happier.

For Jen Sulligan, who was diagnosed with stage IV Hodgkin’s lymphoma in 2010, making soap and lip balm for her Etsy shop Little Batch Apothecary gave her a much-needed distraction. “I got through treatments [six months of chemotherapy] by looking forward to the days when I felt strong enough to make soap,” Sulligan says.

Katrina Isbill-Floyd crafts through a bout of fibromyalgia.

Katrina Isbill-Floyd crafts through a bout of fibromyalgia.

Sulligan got interested in soap-making through family stories. “I’d heard a story that, back in the day, my great great grandmother would make basic soap from scratch in a big old tub in her back yard,” she says. “I was intrigued. Although her recipe unfortunately did not get passed down through the generations, through lots of reading and experimentation I was able develop my own fantastic formulation of soap.” She no longer makes soap to sell but she does make it for her family. Her shop now features other products including cologne, perfume oil, hand and body cream and candles.

After Sulligan went into remission, she set to work turning her shop into her full-time job rather than returning to her career as a school librarian. “I like the virtual shopping mall aspect of Etsy,” she says. “I get customers coming into my shop that I might not otherwise have come into contact with on my own non-Etsy website.”

Sulligan launched a stand-alone website for Little Batch Apothecary soon after completing treatment and sold her products at craft shows and in a few stores. “I did little to no advertising,” she says. “I still don’t really advertise. The quality of my products and my customer service is what grew my business.”

Turning her craft into a full-time business isn’t easy, but Sulligan enjoys working for herself. “It’s so easy to let our circumstances predict our lives,” she says. “Although a tougher undertaking, it’s a lot more rewarding to take the reins and guide your life where you want it to go.”