Q&As Roundups

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.

Health & Fitness

Fitness, Pain, and Ankylosing Spondylitis

Despite her diagnosis, Keefa Hawkins pushes her body to the limits through Crossfit: part of a quest to show that physical fitness is for everyone.

When Keefa Hawkins’ doctors told her she had ankylosing spondylitis (AS), a type of arthritis that inflames the joints of the spine, they showed her pictures of people in the advanced stages of the condition,  bent over double from painfully fused spines.

But the fitness fanatic had other ideas about her future. “I was convinced that wasn’t going to happen to me. My journey–and my prognosis–would be different,” she says.

Keefa Hawkins pumping iron.

More than two decades later, it seems Keefa’s determination has paid off. The forty five-year old believes the punishing Crossfit regime that sees her working out five days a week and competing in gruelling competitions has kept the worst of her condition at bay.

Keefa was diagnosed at twenty-four. It started with a routine run around the park with a friend. Afterwards, she jumped into her old VW bug and went to put it in gear. To her surprise, she couldn’t press down on the clutch without pain. Later, she realized the pain-causing inflammation in her lower back had built up over months, maybe years. But sat in her old car, Keefa wrote the pain off as a pulled muscle. After all, she was a young woman at the peak of physical fitness.

However, a week later, she was in agony. “I was in so much pain I couldn’t walk. I was bedridden by the last three days. I was an athlete, I trained in martial arts; I went from being an able bodied person to a point where I couldn’t even get out the bathtub by myself.”

I was an athlete, I trained in martial arts; I went from being an able bodied person to a point where I couldn’t even get out the bathtub by myself.

Eventually, her boyfriend carried her downstairs and took her to the emergency room. “At the hospital they didn’t know if I was paralyzed, or what was going on.”

For days, the doctors ran tests, trying to work out what was wrong. Back then, she says, there wasn’t a whole lot known about AS. What doctors believed at the time was that the condition usually presented in white men, especially former drug users. In the decades since, both of these suppositions have been disproven, but at the time–as a Black woman who’d never taken drugs in her life–Keefa didn’t fit the profile.

After four days of head scratching, a young resident finally suggested the possibility of AS. Tests confirmed Keefa had a protein called HLA-B27, a common genetic marker for the arthritis. AS specifically affects the spine, causing inflammation that leads to chronic pain. In advanced cases, the spine fuses into a fixed, immobile position, and the autoimmune disease can also affect the eyes, lungs and heart.

Her doctors gave her high doses of anti inflammatories and sent home to her family, who had to bathe and care for her due to the atrophy that had set into her spine.

Although her diagnosis opened the door to her current, positive mindset, at the time it was depressing, she says. “I felt helpless, hopeless. I had a dog training business at the time, I had clients. The hardest thing was explaining to people, my clients. I shouldn’t have this thing… but I got it.”

“The hardest thing was explaining to people, my clients. I shouldn’t have this thing… but I got it.”

But Keefa’s not one to dwell on the past. Both before and after her diagnosis, she’s lived a normal, happy life: she’s since had two children, and has forged a career as a project manager for AT&T. And the exercise fanatic who was determined to not become the hunched-over casualties in the doctors’ pictures believes her passion for high-impact physical exercise–particularly Crossfit–has helped keep her condition at bay.

Eight years ago, looking for exercise classes, Keefa discovered a small local gym offering Crossfit classes. She instantly fell in love with the high-intensity workout, and soon began running her own classes in her garage for a few neighbors and friends.

Keefa opened her own Crossfit gym to help show that physical fitness is for everyone.

Two years later, she opened her gym, where she encourages people from all walks of life to embrace the Crossfit lifestyle, driving her clients to reach their fitness goals with a cheerful, tough-love approach.

“If someone’s finding it hard, I just say, ‘sometimes shit is hard. But you see my ass in the gym: you’re twenty-four, come on, get busy girl!’”

She believes her experiences allow her to connect with her clients, some of whom have been through their own health problems – cancer, strokes – and found her after hearing her story. “Everything I went through is a testament to people who come to my gym. I have this experience that God gave me specifically for them. My story is everybody’s story to some degree.”

“My story is everybody’s story to some degree… If you don’t experience pain you’re not human.”

“I’m a hundred percent convinced that’s why my experience has been what it is.”

Two years ago, a desire to push herself to the next level in Crossfit took Keefa off the diet-and-exercise path to managing her condition. Until then, Keefa had managed bouts of pain with an over-the-counter painkiller. But when she realized how much the pain held her back from excelling physically, she began taking Humira, an anti-inflammatory arthritis drug.

“I thought with all my working out I could just beat [AS]. And I really didn’t want to take any medication, I wanted to do it on my own, but I wanted to dead lift heavier, and my joints stopped me. It was painful. I can deal with nagging chronic pain, but lifting would put me out for a week at a time.”

Keefa when she’s not breaking personal bests.

Her plan worked, and Keefa redoubled her efforts to achieve her fitness goals. Last year she achieved a position in the low 400s in the Crossfit World Games qualifiers. This year, she’s hoping to make the top 250, which would mean entry to the games in the Masters Division, for competitors aged forty five to fifty.

Keefa’s doctors would probably horrified to hear she’s deadlifting 225-pounds and counting, she admits. So she keeps it to herself. “I don’t tell them all the heavy stuff. They have always said I shouldn’t do that, but I didn’t hear that. I have claimed I’m a special case.”

“Every twelve weeks I have to do blood tests. And that’s what my doctors freely get from me. They get blood, they don’t get to tell me what else I can do.”

As for her prognosis, Keefa’s not too sure what’s in store. But one thing’s certain, and that’s Crossfit. “I believe I’ll be competing until I die. God promised salvation, he never promised life would be pain free. Success isn’t pain free, and pain is part of the human condition. If you don’t experience pain you’re not human.”

Health & Fitness

Why Facebook Diets And Chronic Illness Don’t Mix

That latest fad diet lighting up social media might be good for healthy people, but for a person with a chronic condition, it's a lot more complicated.

If I had a dollar for every time I’ve been told that a certain diet will cure my incurable autoimmune disease, I’d be a very rich woman. I’d still be sick, but at least I’d be rich.

“Eat fermented foods!” “No don’t, they’re difficult to digest, you need to stick with everything raw, especially raw milk,” “Don’t eat dairy! You’re definitely lactose intolerant,” “You should do the keto diet, it’s just all meat and all dairy, fat is good for you,” “Fat is definitely not good for you, and anyway aren’t you vegetarian? You should just eat vegetables and air.”

Like every person with a chronic illness, I’m constantly bombarded with often conflicting advice about curing myself through often absurd dietary choices. And these days, more often than not, it happens over Facebook, or other social media platforms.

Spoiler alert: I cannot cure my arthritis by eating lettuce and anchovies every second Tuesday, and neither can someone with Crohn’s Disease, or diabetes, or Multiple Sclerosis.

Spoiler alert: I cannot cure my arthritis by eating lettuce and anchovies every second Tuesday.

I’m not saying that changing your eating habits won’t make any difference at all. In a lot of cases, it can. But generally, fad diets and chronic illness don’t mix. When it comes to food, there’s a lot of decision-making that healthy people don’t see. There’s a lot of weighing things up.

When I got first sick, I suddenly couldn’t tolerate things I’d eaten my whole life – garlic, onions, anything spicy, anything with a lot fibre, fermented foods, the deadly nightshade family which includes potatoes and tomatoes, and most processed products. Because I’d had an infection in my stomach that left it constantly inflamed, anything that irritated it caused me pain.

Now, five years down the track, I’m able to eat some of those foods in very small amounts. Inflammation in my stomach isn’t as much of an issue. Unfortunately, it didn’t go away: it spread into my spine, and triggered the gene for Ankylosing Spondylitis. So I developed the inflammatory autoimmune arthritis I have today.

This is what causes me widespread pain, and if I eat the wrong thing, that pain will get worse, not just in my stomach, but in my shoulders, spine, and pelvis. Therefore, like most sick people, I take my diet pretty damn seriously. Despite this, though, the well-meaning tips keeps rolling in. It’s almost like people think those of us with chronic conditions don’t have Google.

The problem with such well-meaning advice is that none of these fad diets are as accessible as they sound, especially if you’re sick.

It’s almost like people think those of us with chronic conditions don’t have Google.

Most fad diets require a person to go all-in. First, they’re often expewnsive, which a person who is chronically ill–and therefore, unable to work–might be even less able to afford than people who are well. They’re designed around what a healthy person can do or eat, not the unique circumstances of someone dealing with a condition. They also often affect energy levels, at least at first, and these crashes can be particularly destructive for chronically ill people, who are often already struggling to make it through the day.

I’ve definitely tried my share of specialty diets. The first one I tried was one that restricts difficult-to-digest sugars, called FODMAPs. This diet requires you to cut back on an enormous list of foods, including things you wouldn’t normally consider sugar, such as some vegetables, dairy products, baked goods, and even pickles. I went into that diet in good faith, but my budget, energy, and pre-existing food restrictions all ended up getting in the way. Eventually, I had to quit: I just couldn’t get a good nutritional balance. And one way or another, that’s been true of every diet some well-meaning person has recommended to me since.

Earlier this year, after five years of struggles, I finally went to see a private nutritionist. The experience was revelatory. It’s not that I haven’t had professional advice over the years about my diet. I’ve seen doctors, specialists, dieticians, but they were all very focused on what I shouldn’t eat. My nutritionist was the first person to tell me what I should. She asked me about my medications, and asked me what I was currently eating. Then, when we were done, she took down a book on the Mediterranean Diet from her shelves, which relies heavily on vegetables, legumes, whole grains, meat, and fish. There’s a few things in the list I can’t have, but this is the closest thing I’ve found to a healthy way of eating, while still making room for my illness.

There’s only one person I listen to about my diet, and it’s not you, it’s not Mark Zuckerberg… it’s my nutritionist.

So no offense if, these days, there’s only one person I listen to about my diet, and it’s not you, it’s not Mark Zuckerberg… it’s my nutritionist.

I know your advice is well-meaning, and maybe that a particular diet worked for you, but if you don’t have my chronic illness, your advice might as well be coming from another planet. The latest fad diet lighting up Facebook isn’t going to make me well, and as hard as dieting is for anyone, for people with chronic illnesses, it’s even harder. The best thing for healthy people to do, to support their sick friends, is offer advice only when asked…

And bring the chocolate, where applicable.


Doctors, Stop Gaslighting Women in Pain

For almost 4,000 years, doctors have been treating women in pain less seriously than men. That needs to stop. Now.

It’s February 2014. It’s been a year since I began experiencing all the symptoms of inflammatory arthritis, but had yet to get a diagnosis. For the greater part of the last year, I’ve been told by my doctors that it’s “all in my head.”

On this particular morning, I wake abruptly to an intense pain in the base of my throat. I immediately began to panic–it felt like I couldn’t breathe. I texted my then-boyfriend. “Something’s wrong. I think I need to go to the hospital.” He arrived almost immediately. I never wanted to go to the emergency room–who does?–so he knew things were bad.

I don’t remember exactly how long it took for someone to see me. I just remember the agony, the fear that the pain would spread, and the worry that I’d be sent home with no answers and no relief.

I was right about the last thing.

When a doctor eventually saw me, he listened for mere seconds to my description of the golf ball in my throat, and told me I was having a panic attack.

“Calm down,” he said, and left.

I was aghast. I’m intimately familiar with panic attacks–this wasn’t one. Even if it were, telling me to “calm down,” wouldn’t help me. Instead of treating me, the doctor gaslit me, dismissing me out of hand for being an overly emotional woman.

Instead of treating me, the doctor gaslit me, dismissing me out of hand for being an overly emotional women.

I was later diagnosed with Ankylosing Spondylitis. Needless to say, there’s no “calming down” from a chronic autoimmune disease of the skeleton.

This story is in no way unusual. Women’s pain has been being taken less seriously than men’s for millennia. The wordshysteria andhysterical come from the Greek word for uterus, showing that our reproductive organs have been used as scapegoats for pain and the response to it for millennia. In fact, the first use of the word “hysteria” to refer to women in pain dates back to Ancient Egypt. In 1900 BC, the Kahun Papyrus names “spontaneous uterus movement with the female body,” as being responsible for symptoms, and the Eber Papyrus in 1600BC discusses ways to force the wayward organ back to its natural position.

In Lesley Jamieson’s Grand Unified Theory of Female Pain, the author argues that women’s pain has long been “perceived as constructed or exaggerated.” According to Jamieson, whose work is backed up by The Girl Who Cried Pain–a legal study identifying the gender bias in pain management–women are “more likely to be treated less aggressively in their initial encounters with the health-care system until they prove that they are as sick as male patients.”

In other words? Doctors gaslighting women in real pain isn’t the exception. It’s the status quo.

Doctors gaslighting women in real pain isn’t the exception. It’s the status quo.

Case in point: with the arrival of her period at age 12, Maria-Jane Brodie began exhibiting all the symptoms of endometriosis, a chronic inflammatory illness that affects 176 million women worldwide. Maria-Jane would be in so much agony each month, she would vomit non-stop for 36 hours. She was told “that’s what periods are like – get used to it.” Despite the debilitating symptoms, it took a decade of illness before a doctor finally agreed to give her the IUD that makes her life manageable.

Here’s another example. In 2015, following the most terrifying hours he and his wife had ever experienced, Joe Fassler wrote the groundbreaking article How Doctors Take Women’s Pain Less Seriously for The Atlantic. Joe describes waking to Rachel screaming, and finding her doubled over in anguish. When asked where the pain was a scale of one to ten, she repliedeleven. He called an ambulance.

“There is nothing like witnessing a loved one in deadly agony,” writes Joe. “Your muscles swell with the blood they need to fight or run. I felt like I could bend iron, tear nylon, through the 10-minute ambulance ride and as we entered the windowless basement hallways of the hospital.”

“And there we stopped.”

“Nationwide,” says Joe, pulling from this study on gender bias in emergency department treatment, “men wait an average of 49 minutes before receiving an analgesic for acute abdominal pain. Women wait an average of 65 minutes for the same thing. Rachel waited somewhere between 90 minutes and two hours.”

Men wait an average of 49 minutes before receiving an analgesic for acute abdominal pain. Women wait an average of 65 minutes for the same thing.

That is Rachel’s story. That is my story. That is Maria-Jane’s story. This is women everywhere.

In Rachel’s case, she had an ovarian torsion, an indescribably painful event where the fallopian tube twists, cutting off blood. It took until 10pm that day for a doctor to finally diagnose the issue. Fourteen and a half hours from when Rachel’s pain began, to surgery. And if the problem had been identified sooner, she may never have had to lose her ovary.

Aubrey Hirsch’s comic, Medicine’s Women Problem, went viral after hitting the nail on the head. Hirsch illustrated her experience of being told for years that her symptoms–weight loss, strange bruises, reactions to food, pain, even trouble with her heart–were caused by anxiety and IBS. Eventually, things became so bad that doctors ran a gamut of tests and discovered she had Graves’ Disease, an autoimmune disorder affecting her thyroid.

None of her problems had been in her head. As with me, her diagnosis took years, and before she had it, she was treated as if the issues were minor and inextricably linked being female.

“The system doesn’t have a crack in it” she writes. “For many women, it has a crater.”

The system doesn’t have a crack in it… For many women, it has a crater.

After centuries of having our pain dismissed and experiences ignored, it’s about time medicine took note. In the age of online communities and social media, women simply aren’t going to be silent anymore. It’s encouraging to Google women’s pain and see just how many people are talking about this. Article after article, study after study, proves that we’re dealing with a major problem.

So what are we going to do about it? Medicine has had 4,000 years to evolve, yet it’s still seeped in what amounts to a deadly culture of sexism. How many women have died in those millennia because their pain–the body’s warning sign that something is wrong–have been dismissed until it was too late.

Women speaking up, and all the studies in the world, won’t affect change unless doctors do. That has to come from within the medical system. Gender bias in medical treatment is a proven fact. Addressing it should be woven into the way doctors are taught to be doctors.

There’s a popular Maya Angelou quote that in these divisive times has become a rallying cry for many around the world: “When people show you who they are, believe them.” Just as much as the Hippocratic Oath, it’s important for doctors to remember that, when it comes to pain, this is their duty as well. When people show you they’re in pain, don’t gaslight them for being women.

Believe them.

Creative Commons photo at top courtesy of Amenclinics.


How Birdwatching Helps Save Me From Chronic Pain

'Peace and patience' are rare commodities when you live with pain... but a day spent birding is an extra day added to your life.

I was a sickly, underweight nine-year-old using borrowed skates in the playground when one leg went east and the other west. That dark night, deeply in shock, my hospital bed was packed with sandbags to stop me moving. Full of morphine so the shock would wear off before surgery, I was fearful of the long sleep so, to stay awake I grasped onto and befriended my pain. This strange relationship with pain and disassociation with physical reality augured a life beset with, but not defined by physical dysfunction.

Even after I was out of the hospital, I spent a year barely walking, and doctors told me that perhaps I had some underlying condition, which would turn out to be ankylosing spondylitis. Struggling to find alternatives to bed, books, and boredom, my Dad took me to the lake, where we drowned worms and watched wildlife while fish ignored our bait.

One day, quiet and still on the water’s edge, a kingfisher landed on my rod, dived for a minnow, and flew away. He left behind a birder.

Almost sixty years after that kingfisher landed on my fishing pole, I still fish a little, but my lifelong passion is birding… and in watching birds, these everyday miracles of feather and flight have helped save me from the pain, depression and tiresome routines of a life of chronic illness.

These everyday miracles of feather and flight have helped save me from the pain, depression and tiresome routines of a life of chronic illness.

For two decades now I have been defined by birds and birding; writing about birding under the name ‘Fatbirder’ (the curvature of my back may be fickle fate, but the curvature of my front is mostly overindulgence.) During that time, I have traveled the world to see new birds, and found where the developed world makes a big deal out of the cost of making things accessible, the third world uses their ingenuity. (At home, it can take a week to get a wheelchair puncture fixed and months to install a ramp, in Kenya a puncture was repaired in minutes and a ramp installed between arrival and lunch an hour later!) Those travels are recorded in my book, A~Z of Birds.

Through birding, I have come to appreciate the ‘social model’ of disability. The disease or injury you have isn’t what disables you: it’s society’s response, (or mostly lack of it) which is disabling. The advantage of this concept of disability is that it stops you from seeing yourself as the problem, or relating to the world only through your disease or injury. Pursuing that model is just and proper. Moreover, when you stop relating to the world only through its interface with your infirmity you can transcend the labels that society often applies.

For me that transcending behavior is watching birds.  One could be quite simplistic and assume it’s all about the freedom of flying that birds embody. Our earth-bound bodies seem a poor second to the three-dimensional life of birds. What we must do at rest, some birds do on the wing. Some, like Swifts, fledge and stay airborne for as long as four years eating, mating and even sleeping high in the sky. But it is so much more than this.

Our earth-bound bodies seem a poor second to the three-dimensional life of birds.

It is hard to define the magnetic attraction of observing birds. Yes, they master an element we have taken millennia to even enter. Yes, many have intrinsic beauty. Yes, their songs can transport you to a concert hall or haunt you with their sadness, and yes, many show amazing intelligence despite their tiny brains. The truth has many levels from beauty to awe, from the loyalty of life mating storks, to the super-fast voracity of a hawk or the plaintive call of a curlew on a moor. For me, it is that I become captured by their movement, haunted by their song, inspired by their jeweled or cryptic plumage. It is no one aspect, nor even all aspects, but the fact that I become lost. And in becoming lost, I lose my pain, transcend my physical restrictions and forget the daily drudgery of medication and disabled daily living.

The novelist wrote ‘I am camera’, not ‘I am a photographer’. Somewhere around twenty years ago I stopped being someone who watches birds and became ‘birder’. I watch birds, make a living through birds, write about birds, travel for birds, and  passionately defend birds against habitat destruction. Birding doesn’t just define me: it saves me from myself. It’s not only mindfulness, although doing what you enjoy definitely does you good. Bird song is the choir and nature the cathedral that define my spirituality, taking my soul where the frail body cannot go.

Birding doesn’t just define me: it saves me from myself.

In 1653, in ‘The Complete Angler’ Isaac Walton talked of Sir Henry Wotton, describing him as… ‘a most dear lover and a frequent practicer of the Art of Angling’; of which he would say, “‘Twas an employment for his idle time, which was then not idly spent, a rest to his mind, a cheerer of his spirits, a diverter of sadness, a calmer of unquiet thoughts, a moderator of passions, a procurer of contentedness;” and “that it begat habits of peace and patience in those that professed and practised it.”

All of which could be said about birding, but in spades. ‘Peace and patience’ are rare commodities when you live with pain, the daily grind of taking hours to achieve what able-bodied people can do in minutes, or the frustration of seeing what is often out of your reach. Those vicissitudes rob you of days, but a day spent birding is an extra day added to your life.

Photo provided under Creative Commons license by Flickr user coniferconifer.


The Sexpert Helping Bring Self-Love To Everyone

People with disabilities or illness need as much comfort as anyone, and maybe more. That's why Alice Jones, who has inflammatory arthritis, has made it her mission to talk openly about sex toys.

“We need to talk about masturbation!” says Alice Jones. Having worked in an online sex store for a year, she’s something of an expert, so I’m all ears.

Alice Jones. Photo: Ashley Church

Alice is passionate about helping people find the right sex products for them, which includes people with chronic illness or disability. I asked if she helped many people who fall into that category, and she replies “Definitely.”

“Often it’s not a disability you’d think of straight away, or an obvious physical one. But people need and want sex aids for all sorts of different reasons. There can be stigma around disability and sex, like maybe people don’t think people with disabilities want or have sex. But I can tell you that disabled people have sex lives just like anyone.”

Alice’s own experience of pain helped give her an insight into what customers might need.

I can tell you that disabled people have sex lives just like anyone.

“I have Ankylosing Spondylitis, or inflammatory arthritis,” she says. “I was diagnosed in my late teens, after years of symptoms.”

“Sometimes it was so bad, I’d just be writhing around on the floor. I can remember my mother taking me the emergency room. They said that maybe I’d dislocated a hip, but they didn’t really know what was wrong. They gave me some crutches and sent me on my way.”

Jones at home, pouring tea. Photo: Ashley Church

It was several years of this before she finally got a diagnosis, and began treatment with the immunosuppressant Humira. Alice injects the drug herself every two weeks. Each shot is worth about US$1400, but it is subsidized in New Zealand, where Jones lives.

“I’m so lucky that it works for me,” she says. “I sometimes feel… not like a fraud, exactly, but when I talk about having arthritis, I have to remind myself how bad the pain once was, because that’s not my reality right now.”

Having the disease under control means Alice has been able to pursue a career in advocacy and more recently in customer service and marketing.

“I worked for a mobile health start-up for a couple of years as a Community Manager, of public social media as well as private patient communities,” she explains. “I then pursued a role in sex toy retail because the industry really intrigued me, and I was also interested in navigating a social media presence for a sex toy company.”

“I love the conversations that work enabled me to have both professionally and in my personal life. I used to be so prone to blushing over anything to do with physical intimacy, and now I’ve been on Facebook Live talking about masturbation and butt plugs for goodness sake.”

Alice Jones overlooking Wellington. Photo: Ashley Church

I used to be so prone to blushing over anything to do with physical intimacy, and now I’ve been on Facebook Live talking about masturbation….

She says that role not only increased her confidence, it gave her the opportunity to explore her interest in sex and disability.

“While I initially joked with friends a bit about how my experience working with patients could transfer over to sexual health, that actually turned out to be very accurate.”

“When people think of sex toys, many of them will immediately picture dildos, or maybe a basic vibrator,” Jones explains. “But there are so many more options. For people with physical disabilities or limitations, there are hands-free vibrators and masturbators, position aids like wedges and harnesses, and products to help those with erectile dysfunction. I’ve helped people who had mental limitations themselves or were caring for someone who does, either to find a suitable vibrator or masturbator to help satisfy themselves, or sometimes to find a life size sex doll –which obviously satisfies a deeper human need for a sense of intimacy than just an orgasm, and something I’m incredibly respectful of and sensitive to. Yes, inflatable dolls are good laugh, and some of their branding is pretty vile – but chatting to a customer about needing an inflatable doll to cuddle up to, it’s a little heartbreaking to hear to be honest, but also kind of wonderful that with online shopping customers can get those products easily and discreetly.”

Jones strokes her cat. Photo: Ashley Church

However, she says there are some conversations that need to take place more publicly, which is part of the reason she’s working on a secret new project, to be launched in the next few weeks.

“I’m excited to be able to write more in depth about sexuality and sex toys, without a pseudonym or a commercial interest.”

Sexual health just isn’t talked about enough… And disability or illness can add another layer to that.

“Sexual health just isn’t talked about enough. It’s ridiculous to have any kind of stigma around it, because most people are doing it, or wanting to, whether it’s alone or with their partner or partners. And disability or illness can add another layer to that. Fatigue and pain can impact on what you can do or feel like doing. If your body changes because of your disability, that might affect you. Medication is its own minefield: it can change your body, your libido, your confidence.”

Alice says while she’s become more open about sexuality, she’s found it both fascinating and disheartening how reluctant we are as a society to talk about it.

“I’ve dealt with so many customers who were understandably nervous to discuss their sexual needs and seek advice, especially those who had disabilities to consider… and if it’s that difficult to approach those who are talking about sex openly all day long, just imagine how much more challenging people find it to broach those topics in a clinical setting, with their GP or specialist.”

This is not the first time Alice has acted in what can be seen as an advocacy role. At twenty, she co-founded the nationwide group Super Young Arthritics, which focused on supporting young people with arthritis and raising awareness about the disease.

“I think things have changed since then,” she says, “but as a young person with arthritis – there wasn’t much for us, in terms of information or support. People still have this idea of it as an old person’s disease.”

In fact, arthritis is the single greatest disability in New Zealand. More than half a million people are affected by arthritis during their lifetime, and at one any one time, 1000 children and young people under the age of twenty are affected.

Medication is its own minefield: it can change your body, your libido, your confidence.

Alice says her symptoms were at their worst during the time when most people are exploring their sexuality, but while that presented some challenges, she doesn’t feel like it had as much of a negative impact as it could have.

“I guess maybe there were specific things I couldn’t do because of joint pain and stiffness, but fortunately I don’t think it ever prevented me from having a good sex life, and orgasms are pretty wicked painkillers!” she laughs.

“I vaguely recall there being some euphemistic reference to sex amongst the pages of pain scale questions I filled in before specialist appointments, but I definitely think that even if my joint pain had been having a big negative impact on my sex life it’s not something I would have thought to discuss in a clinical setting then,” Jones continues. “I wouldn’t have seen it as a relevant issue that needed to be considered in my treatment. Being able to work and sleep were the only things I considered priorities.”

She’s grateful that her condition is under control now, but being conscious of the fact she has Ankylosing Spondylitis “for life,” and that it could flare up at any time, makes Alice grateful for what she gets to do now, and that she can use her past experiences to inform helping others.

“I don’t I tell people about it all the time,” she says. “But I do have that insight, and that awareness. And that can be really useful.”


The Strange Rewards Of Being Sick

Folks writer Sarah Wilson talks about the intense vulnerability and great kindnesses created by being chronically ill.

“Rats,” I mutter to myself, as I finish watching Brene Brown’s YouTube video about vulnerability being necessary to create happiness for the umpteenth time, and flop backwards on my bed.

Author Sarah Wilsonl

Author Sarah Wilson.

You’d think that her message would have sunk in by now. After all, she’s done over a decade of research into shame, fear, vulnerability, and human connection, and I’ve been trying to put her words into practice since I first discovered her.

But being vulnerable isn’t something that comes easy to anyone. And until I got sick five years ago, I had no idea how to do it or how it would change my life.

Last November, I got on stage in front of a packed auditorium in nothing but a bikini and red paint, and told the story of my illness through poetry.

I don’t think I’ve ever been so scared, or so utterly euphoric.

Let me be real for a second. Illness loves shame. It encourages you to hide and lick your wounds in private. It wants you to be isolated and cowering. That’s how it wins.

I did that for a long time. When I got sick, I went from being a fiercely independent, successful, loquacious woman to one who was humiliated and silent.

Illness loves shame… That’s how it wins.

There was nothing pretty about my illness. Hours spent in the bathroom. Slowly losing the ability to eat, exercise, spend time with my friends – and work. Writing was my whole world, and I couldn’t do it anymore.

By the time I was admitted to hospital in March 2013, it was clear that something was very wrong.

With drips in both arms, lying in an isolation room due to being highly contagious, I looked down at my wasted thighs in shock and burst into tears.


Sarah with her beloved cat.

Three months before, I’d been diagnosed with a stomach infection and given a series of aggressive antibiotics. The treatment unfortunately caused an opportunity for a bacterium called Clostridium Difficile to overwhelm my entire system. C.Dif was behind my decline and urgent incarceration.
The comedian Tig Notaro, in her famous standup set where she revealed she has breast cancer, also talked about having C.Dif.

“I was in for a mammogram and the nurse says ‘You’re so skinny. How do you keep such a flat stomach?’ and I said ‘Oh, well, I’m dying.”

It’s the most hysterical and heartbreaking thing I’ve ever heard.

I didn’t die, but in the months after I came home from hospital, I admit I wished I had. Barely able to move, unable to do much more than stare at the wall, I grieved for the job I’d had to give up, for the person I had been, for the future I had pictured. That December, I was admitted to a respite house after I harmed myself.

Not long after that, I moved in with friends. It took something drastic to make me accept that living alone was no longer viable.

Admitting I needed help was agonizing.

Nothing has ever cracked me open as much as being sick. And nothing has ever been so rewarding.

Once I opened the door, I found myself surrounded by loving and supportive friends and family. I rested and waited to get better. And waited. And waited.

I saw a slew of doctors, each one more puzzled than the last. What was going on? Why wasn’t I recovering? The months passed.

In late 2014, I was finally diagnosed with Ankylosing Spondylitis: autoimmune arthritis that attacks my spine, ribs, and pelvis. The gene was for the disease was triggered by my prior infection.

Sarah Wilson speaking with Coordinator of the Nelson Women's Centre, Britta Hietz. Photo: Doug Brooks

Sarah Wilson speaking with Coordinator of the Nelson Women’s Centre, Britta Hietz. Photo: Doug Brooks

It found its opportunity to spark to life and spread. Pain and exhaustion brought me to my knees.

My first act of public vulnerability was to ask for help to pay for an MRI. The scan would confirm where the damage was happening in my body, and allow me access to medication to counteract its progress.

I raised the money in a matter of hours. I sat at my computer sobbing in disbelief. Who were all these people? Why did they care about me? How could I deserve this kindness?

How could I deserve this kindness?

Months before this, I had started a website to write about being ill, and my fight to get social security. It caught the attention of media and I was offered a newspaper column. My life became public property.

I hated being so open about my struggles. But for every cruel internet comment about how I was “faking it” to get money, I got a dozen more from people thanking me for speaking out. Here in New Zealand, the stigma around being sick and on welfare is violent. I wanted to combat the negative stereotypes by being brutally honest about how being sick affected me, and how hard I had to fight to get the welfare I was entitled to.

I met more and more people like myself. I made new friends. I became closer to old ones, as they began to understand my new life.

So, when I asked for an MRI… the call was answered.


Sarah’s battle against chronic illness, in the style of silver age Marvel Comics. Illustration by Hayley Heartbreak.

I’ve since tried more medications than I care to name, looking for relief from the pain and exhaustion of my disease. There is no cure. And so far, for me, there’s been no relief.

Again and again, my writing in vulnerability has been met with incredible kindness. I sleep on a mattress that was paid for by fundraising, because my old one made my pain worse. I read donated books. I snack on chocolate posted to me because people know it’s been a tough week.

Last year, I was invited to perform in a literary festival in New Zealand’s capital city. I was horrified. I thought I’d for sure throw up on the spot.

But it was an opportunity to tell the story of illness in a different way. I couldn’t turn it down.

There’s not much that’s more vulnerable than standing with your back to an unseen audience, wearing only a bikini and stripes of red paint that follow the lines of pain in your body.

Shaking, I read a poem about invisible illness. Then I turned around and introduced myself to a sea of eyes that seemed to look straight into the heart of me, where I felt tiny and terrified. Where I was convinced I was an imposter; that no one could possibly want to listen to me; that everyone thought I was faking it all.

It went well. I didn’t puke. I didn’t trip over the microphone. And no one called me a liar.

I continue to write about what it’s like to be an almost-thirty-year-old woman with a chronic illness that renders me mostly unable to work, eat properly, socialize. I write about pain, about politics that affect me, about the impact of it all on my mental health. I’ve published a tiny poetry book. I want to write another one.

Brene Brown is right. True human connection only occurs when we share who we really are. I want to keep doing that, for myself and for others.

Even when I’d rather poke out my own eyes than walk out on that stage.  


To Cope With Chronic Pain? Write Your Heart Out

"Illness takes a lot from you," says poet Sarah Wilson. "Writing is how I take the power back."

“Illness takes a lot from you,” says poet Sarah Wilson. “Writing is how I take the power back.”

Sarah Wilson is a 29-year-old writer, journalist, and poet from Nelson, New Zealand. She is also a sufferer of chronic pain. Diagnosed with Ankylosing Spondylitis several years ago, a chronic autoimmune disease of the skeleton, Sarah has since been forced to re-examine everything, and adapt to a new way of life and work.

Her condition has brought her to new understandings of her body and the way people with disabilities and chronic pain are perceived and treated in society. Consequently, she has become an outspoken activist for health, gender, and social welfare issues in her home country and abroad.

Folks sat down with Sarah to ask her about the role writing has had in her life, both as a way of coping with chronic pain, and as a mode for empowering the voiceless.


When did you start writing? What do you love about being a writer?

I’ve always been a writer. I wrote my first poem when I was about 8. That’s the first one I can recall, and it was about lions deciding to be vegetarians. I was interested in cruelty, and it was about subverting the natural order of things and making choices that benefit all people, or animals in the jungle. It rhymed, and had some terrible lines about lions on the plain deciding who to eat for dinner and choosing some grass instead.

I was lucky because I always knew what I wanted to do with my life. It wasn’t about choosing a career so much as knowing that I am a writer. It was just a given for me. It’s my purpose. I feel lucky that I have ability to communicate what is so often incommunicable. When someone responds to me and says “Oh my God, you’ve written how I feel,” I realize how much power words contain. They can be both a weapon, and a pillow.

I feel lucky that I have ability to communicate what is so often incommunicable.

I kept writing creatively for myself throughout school, and my poems were published here and there. I recall the first one I had published in a national magazine when I was about 14. Typically, it was about parents not listening [to their kids] (mine were mortified). My poetry from 14 to 22 was prolific: I have folders and folders of terrible angsty work, but it was a foundation for communicating important feelings – the real guts of human experience.  

I did a Bachelor of Communications majoring in journalism, with a minor in creative writing at Massey University in Wellington, New Zealand, and later I studied poetry at the International Institute of Modern Letters with award-winning poet Hinemoana Baker.

I started working as a journalist and then went into communications in the public service. Later I started my own communications and writing consultancy in Nelson, at the top of the South Island. It wasn’t long after that that I developed Ankylosing Spondylitis, a form of genetic inflammatory arthritis. It’s rare for women my age to have it, so writing has allowed me to connect with other women who do.


How does writing give you an avenue to deal with your illness?

Illness steals a lot from you. It isolates you and it really impacts your sense of agency and power. Writing is how I take the power back. Articulating my experience through poetry and prose allows me to process the experience, to validate it by revealing the hidden vulnerabilities, and to connect with and help others in similar situations.

Has your condition given you new or different opportunities?

I became outspoken about the health and welfare system in New Zealand. The country has a publicly funded health system that’s meant to be open to all, but it’s far from perfect. I struggled to access health support and disability entitlements. Part of my response to this was to start a website, called At first it was anonymous and I tried to stay out of politics, but it became clear that health is a political issue, and being able to write well and articulate well was really key to affecting change. I needed to put my face and my name to my words.

I was overwhelmed by the response. I was flooded with emails and letters from others struggling with the same issues. My writing reached all the way to Parliament and politicians and journalists began contacting me. Though I’d always been politically minded I fell into an activist role via the website, Facebook, and Twitter. My regional newspaper, The Nelson Mail, offered me a column which I used to articulate the struggles people like me face on a daily basis in trying to live with pain and access what we’re entitled to.

How has social media figured in your work as a health activist?

It gave me a much wider reach. I can’t necessarily leave the house that much, but social media gave me the platform I needed to share my writing and connect with people. We’re quite lucky in New Zealand to be a country of only four million people, as a lot of our politicians are on social media and they do use it personally (i.e. they run their own accounts). You can connect with them through it and they’ll challenge what they see as unfairness in Parliament. Several of them reached out to me because of what was being said by others on Twitter. The response to my writing on social media was so massive that the challenge was to utilize that in an effective way while still managing my own health.

It enabled me to meet others with chronic pain and collect our voices, which are usually so isolated, into a single force.

What sort of things do you feel people misunderstand about chronic illness and chronic pain?

There’s a deep-seated narrative around relentlessly seeking resolution, and that’s really tiring on its own, even if you don’t have the fatigue and pain that I have. People tend to see chronic pain and illness and disability as this conflict within your body – you are fighting this thing. But often to learn to live with your disability in healthy and productive ways, you have to find a degree of acceptance. It’s not about giving in. It’s saying: “Okay, things are changed. How do I work with that?” For me, I had to accept that my working life as a writer is different now. I can’t work 10 hours a day in an office chair like I used to. I break up my time a lot, I created different physical environments to make me more comfortable. But that doesn’t mean I’m less productive. I just work with my pain instead of using all of my limited energy trying every diet or exercise the internet offers up to fight it.

Does writing feature strongly in your future?

Yes. Writing is all I want to do, and it’s one of the ways I deal with being ill. I’ve just published a chapbook of poetry about illness and identity, and I’m working on a collection of short stories in a similar vein. I’m also chipping away at a novel in which the protagonist hasAnkylosing Spondylitis. I think disability is both underrepresented and misrepresented in popular media, so bringing that into my creative work is another aspect of activism. And it makes me feel happy and fulfilled being able to use my writing this way.

Chronic pain is so prevalent: 11 per cent of Americans suffer from it, according to the National Institutes of Health, which is nearly the population of California. And it’s so often invisible. Writing gives a voice to all of us who live with it.