Ask Ada Explainers

Ask Ada: ‘When Should I Tell A Date I’m Disabled?’

In our new advice column, Ada explains the best way to reveal an invisible disability when dating, and helps a husband understand his wife's decision to undergo a life-changing surgical procedure.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Do I Tell My Date About My Invisible Disability?

“Dear Ada—Reentering the dating world with an invisible disability is difficult. I’ve had mixed results: scaring people off by revealing it too early on or “being manipulative” by not disclosing it for what they perceived as a long time (~2 months, casually seeing each other). Any advice on navigating this situation?” – Sincerely, Brooke

Dating is one decision after another: What should you wear? Where should you go? How long should you wait to follow up for a second date? An invisible disability forces an additional question on you: When should you mention your diagnosis?

I wish I could tell you that there was a formula: for example, if you’re set up with your date through a friend, disclose your disability on the second date, but if you meet online, wait until at least the fifth. But unfortunately, there’s not, just like there’s no clear formula in most dating dilemmas.

I can, however, tell you that you’re wasting your time by keeping the information to yourself. This isn’t to say you should introduce yourself by saying something like: “Hi, I’m Emily and I suffer from Endometriosis!” But bringing up the topic early helps you weed the good dates from the bad ones.

Disclosing your disability shouldn’t feel like a confession. There’s nothing you need to be ashamed of.

I’d recommend disclosing your disability as soon as you’re sure that you’d like to continue getting to know the person you’re out with. You’re not determining if you want to marry them, just whether they’re worth the disclosure.

That answers the ‘when’ but what about the ‘how’? How should you reveal an invisible disability to your date?

Well, the truth is that disability shouldn’t be some shameful secret. It’s a regular part of your life, and that means the best way to disclose it is for it to come up naturally. So if, for example, you have Crohn’s disease, a good time to disclose that would be after you described your food allergies to the server. You could then follow-up by mentioning to your date how much you’ve learned about food since your diagnosis, then let them ask questions, guiding the conversation along when need be.

The bottom line is that disclosing your disability shouldn’t feel like a confession. There’s nothing you need to be ashamed of. Presenting your truth early and earnestly allows your date to process the news with understanding and compassion. If they don’t, then kick ‘em to the curb and try again.

My Wife Wants To Undergo A Double Mastectomy. Help!

Dear Ada—Recently, my wife of three years discovered that she had the BRCAI mutation, which makes it statistically much more likely that she will get breast cancer. Her mother and grandmother died of breast cancer, so my wife wants to get a preventive double mastectomy. But I’m not so sure. I’ve tried to talk to my wife about it, but she’s adamant there’s nothing to talk about: even though she doesn’t have cancer yet, she’s made up her mind, and it doesn’t matter what I say.

Suffice to say, I’m struggling to accept her decision. It’s not that I’ll love her any less without breasts, and obviously, I don’t want to lose her to cancer. I also know that it’s her body, and ultimately, that makes it her decision. But choosing to go through such an extreme surgical procedure without really asking me how I feel about it hurts, and makes me concerned about our future. What other extreme measures might she choose without talking to me first?

What should I do? What is the right way for us to approach this?” – Sincerely, Sam

It seems as if your issue is less about the double mastectomy and more about the fact that your wife made this major decision on her own and isn’t listening to your concerns. It also sounds like you think she came to this conclusion too suddenly.

But I think the truth is that your wife has probably been weighing this decision for years. When your wife’s grandmother and mother died of breast cancer, she probably began researching her options, including mastectomy. When it was confirmed that he was a carrier of the BRCA1 mutation, your wife’s decision became clear. It isn’t that she’s taking this decision lightly, it’s that she’s had a lot more time to come to terms with the emotional and physical transformation that will follow removing her breasts.

This isn’t about your wife’s breasts: it’s about navigating a difficult time together while fully supporting the other person.

Meanwhile, you’re only processing all of this for the first time. You don’t have the intimate knowledge she’s gained about breast cancer over the years, and because of that, you’re having a hard time grasping her train of thought. It’s not that she is trying to shut you out of the decision-making process, it’s that you are both literally at different stages of processing the news, without realizing where the other person is at.

While your wife is ultimately the only person who can make a decision about her own body, you both still need to try to come to a common understanding as to why she’s making this choice. So ask her to educate you, and explain how how she came to her decision. Tell her you love her, and accept her decision, but be honest about feeling left out, and concerned about what a failure to communicate productively about major life-decisions might mean in the future.

And then, once she explains? Respect her decision, and support her however you can. Because like you said, this isn’t about your wife’s breasts: it’s about navigating a difficult time together while fully supporting the other person.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Explainers

How To Go To Therapy

Think you don't need therapy? Think again: therapy is for everyone. But there's a right way to do it, and a wrong way.

A lot of people think therapy is only for people who have psychological problems.

Let’s put that stigma to rest. Everyone can benefit from therapy. It’s like going to the gym: going to therapy helps you live a happier, healthier, and more productive life, even if it seems like a drag at the start.


“The biggest misconception about therapy is that you need to have a problem or that there is something wrong with you in order for you to go,” explains Justyna Wawrzonek,  a licensed social worker at the West Hartford Holistic Counseling Center in Connecticut. “That is not what therapy is about. Therapy is basically learning to come home to yourself and be as close to yourself as you can be.”

So even if you think you don’t need a therapist, you should consider making an appointment to see one. It’s an investment into your own wellness every bit as important as eating right, exercising, or the myriad other things people do to improve their quality of life.

But how do you start? How do you find a therapist? And how do you make the most of it?

How to Find a Therapist

First things first. Before you begin the search for a therapist, check with your insurance company.  If you choose to work with a therapist in-network, your insurance company may only cover a certain amount of sessions per year. If you select a therapist who is out-of-network, it is essential to understand your deductible as well as what can and cannot be submitted for out-of-network reimbursement.

Your insurance company’s list of eligible therapists can be overwhelming, so review their specialties. As an adult, you can cross off any therapist that specializes in children or adolescents. Depending on your age, you can either seek out or cross off those who serve geriatric patients. If you are confident that you do not suffer from a specific condition—such as an eating disorder, substance abuse, anxiety, or depression—you can eliminate those specialists as well. However, it’s important to recognize that while you think you understand why you are seeking therapy, once in therapy you may discover there is a different reason entirely.

It’s important to recognize that while you think you understand why you are seeking therapy, once in therapy you may discover there is a different reason entirely.

Once you’ve narrowed down your list, ask your primary care provider for recommendations. You can also check with friends and family if you feel comfortable. Next, rule out deterrents such as location, cost, or lack of appointment flexibility. Then set up initial interviews and ask a series of questions about their approach. This will help you determine if the therapist seems genuine and empathic, if they listen well, and if they ask good questions. During this interview, pay attention to how you two interact: some patients, for example, prefer their therapists to be blunt, while others want their therapists to be more affirming.

What to Expect from Therapy

“In an ongoing therapeutic relationship, you will develop a stronger bond with a therapist,” explains Brian Cassmassi, an adult psychiatrist. “You may not become best friends, but there is definitely a friendlier and easy rapport. Plus, it’s a lot easier to talk about what happened with your days and for the therapist to recall things that may have happened in your past that can clarify a current situation.”

As you become more comfortable with your therapist and continue to learn about yourself, you will develop a growing awareness of the patterns in your life, and how these patterns influence the way you feel and behave. This is what therapy is ultimately about: to gain a deeper understanding of the way everything in your life ties it together.

“Therapy should be challenging and hard—that’s when you know that you are growing.”

“You are the expert of your life,” Wawrzonek explains. “You know where you need to go, what you need to do, and what you want out of life. But you may not know exactly how to get there. It’s the therapist’s job to walk along with the client and help them sort through all the different roadblocks. It is not the therapist’s job to take the client’s hand and lead them somewhere. The client is always in the driver’s seat, and the therapist is using their best judgment as to what may be helpful for their client.”

“Therapy should be challenging and hard—that’s when you know that you are growing,” Wawrzonek continues. “But it also has to have a component of feeling safe, nurturing, and supportive. Without it being hard, safe and supportive, there is something that is missing. All of those components are important.”

What Not to Do in Therapy

Believe it or not, self-sabotage can be common in therapy.

Some of these examples of self-sabotage are obvious. It should go without saying that if you are chronically late or miss the majority of your appointments, you aren’t getting the full benefits of therapy.

But keeping secrets and not being totally honest will also sabotage your therapeutic goals. If your therapist isn’t working with the truth, it’s hard for them to understand what is happening in your life. Therapists aren’t there to judge you or your actions, regardless of their personal beliefs, so don’t be afraid to share.

Your therapist can’t change the world, but they can help you to change yourself.

“If there is a topic that is way too sensitive for you to discuss with your therapist at the moment, but you know it’s important, it may be helpful just to say, ‘there was this rape that happened when I was a teenager, but don’t touch that right now,’” Cassmassi recommends. “During a later session, if you say you were uncomfortable with your boss touching you a certain way last night, the therapist may ask if you want to talk about the rape now or if you still want to talk about your boss.”

Playing the blame game is just as bad. Instead of blaming others for a problem, your therapy should focus on the things you can control. Your therapist can’t change the world, but they can help you to change yourself.

Don’t Be Afraid To Switch Therapists

It’s common to develop a strong connection with your therapist over the years.  Because of this, it may be hard to recognize and accept that you are no longer progressing with your therapist. But if therapy has become a weekly obligation and you are no longer growing, then it may be time for a change.

Remember, therapy is for you, and you should always put yourself first in this relationship. When it is time for a switch, don’t worry about how the therapist will handle the news.

“By the time that somebody is a practicing therapist or psychiatrist, they have gone through thousands of hours of supervision and training,” Cassmassi explains. “While you may think you will hurt our feelings if you leave us, that has been hammered out of us from our training. We are usually well-trained to adapt, and you aren’t going to completely break our hearts if you want to switch.”

Remember: Therapy Is For Everyone

When people haven’t gone to therapy before, they tend to believe it’s only something you do when something is “wrong” with you. But there’s nothing wrong at all with wanting to gain a better understanding of your world, and the tools that therapy teaches us to use—like mindfulness, or coping skills–have broad applications in everything from your career to your love life. .

“One of the things I often hear is, ‘why didn’t someone tell me this in elementary school so that I had this defense skill in my repertoire when I became an adult?’” Cassmassi recalls. “When people finally go to therapy as an adult, they feel like they wish they had at least known a simple trick to help them get through their teenage years. Patients also say, ‘I wish I had that under my belt when I was going through all of this. Maybe those skills would have helped me with some of the minor things, and I would have felt slightly less anxious.’”

“The most important relationship in your life is the one you have with yourself.”

And, it provides a safe place for you to learn and grow under the guidance of a professional who has your best interest in mind.

“The most important relationship in your life is the one you have with yourself,” says Wawrzonek. “And when we can nurture and foster and grow and have a healthy relationship with ourselves, that is going to mirror every other relationship that we have in the world: work, family, and friends. The deeper you get to be yourself, be okay with yourself, accept yourself, love yourself, and be your own best friend, that greatly benefits every area of your life.”

Explainers

How To Create A Chronic Pain Journal (And Why You Should Start One)

To beat your pain, you need to understand your pain. That's why spending just 5 minutes a day writing can be your most effective tool in fighting chronic pain.

I considered creating a pain journal for quite some time before actually starting one.

Before that, I always just pushed through my pain, and I suppose a part of me just hoped that it would eventually go away. After 19 years, though, what got me to start my first pain journal was the sudden realization about how little I actually knew about my pain when meeting my new rheumatologist. She asked me questions, while I was able to describe my symptoms very well, I knew shockingly little about the myriad other factors that could be influencing my pain, from diet to exercise and beyond. Then and there, I decided I need to know more precisely what was going on with my body so that I could collaborate better with my medical team.

Since I started my chronic pain journal, I’ve found the process helpful in other ways. I’m more aware of my pain in the moment, which helps me contextualize it better, as well as better appreciate the moments I’m not in pain. It has motivated me to take better care of myself by exercising or drinking more water, because I can quantify that I am less likely to be in severe pain if I do these things. Finally, having a written record of my pain allows me to better work with my doctor to aid in diagnosis as well as pain management, by allowing me to track exactly how well my medications are working.

If you, like me, are in chronic pain, one of the best things you can do is start tracking it. Here are some of my tips for getting started with a pain journal of your own.

If you, like me, are in chronic pain, one of the best things you can do is start tracking it.

What You Need

A pen and paper. Any notebook will do. If you are proficient at Word or Excel, you can also make pages that you can print out and place wherever you will do your regular recording. It doesn’t matter if you’re using a Moleskine or a stack of looseleaf paper: the important thing is to create a journal that you can take anywhere and that you’re comfortable using.

What You’ll Track

The following are the basic questions that any journal needs to be able to quantifiably track:

What hurts? The part or parts of your body that are currently hurting, identified as specifically as possible. While I experience pain in many parts of my body, I chose to track the worst three locations: my hands, feet, and neck. I suggest starting with three or less to make it easier to stay motivated.

When does it hurt? Here, you want to list where you were, what time it was, and what you might have been doing when the pain started.

How bad is the pain? You need a standardized measurement for pain so that you can see patterns over time. You could choose a very simple scale like “no/yes” or “none/some/a lot.” I chose to use the standard pain scale of 0-10 because I want to demonstrate more nuance than a shorter scale would allow. It is important to note that “no pain” is just as important to register as “a lot of pain,” because this will help you consider what is different about that day why the pain is gone.

A close-up look at my chronic pain journal.

How Often You Should Track?

At least daily. Habit research tells us that we are more likely to complete a task if done daily than when we skip days. But more is better. In my case, because I know that I have a rhythm to my pain throughout the day, I decided to track it several times per day, morning, afternoon, and night (although sometimes I fill in all of those points at the same time before bed).

Other Data To Track

Once you’ve gotten used to tracking your pain for a month or two in a very basic journal, you can start customizing your journal to your experience.

For example, I added a “comments” section under my pain scale, as well as more data points, measuring: activity level (measured from 0-3), exercise, medications or treatments I was currently trying, and hydration (measured by poor/average/good)

Activity Level — measured on a scale from 0-3 (3 being the highest)

Exercise – type/duration (for me, this is differentiated from activity level because it is focused time set aside for exercise and usually includes stretching)

Medications – type

Treatment – type

Hydration – measured by poor/average/good

Everyone’s pain is different, so your journal will likely be different from mine. Keep experimenting with what works for you, and what information you find useful!

Everyone’s pain is different, so your journal will likely be different from mine. Keep experimenting.

Stick With It!

A chronic pain journal is only useful if you use it consistently, but consistency can be hard to establish. I suggest you put your journal in a regular place, and tie your habit of logging your pain for the day with another habit you’ve already established: for example, if you take medications at a particular time every day, put your journal near your medicine and commit to tracking your pain at the same time as you take your pills.

Conclusion

Pain is exhausting, and sometimes the idea of adding one more thing to your to-do list when you are worn down feels devastating. But a chronic pain journal is a small commitment that anyone can make to try to get to the bottom of their pain for once and all. Don’t be hard on yourself if you miss a day or two: it’ll be okay, just pick it back up when you can. Some data is always going to be better than no data, so anything you can write down will help in the broader battle against pain. Think of your journal as one small thing you can do to try to understand your pain and use it as motivation to try new ways to lessen its burden.

Explainers

How To Deal With Chemotherapy: Everything You Need To Know

So you, or someone you know, is getting chemotherapy. Here's what you need to know.

Chemotherapy. It’s not a feel-good word. It conjures up images of pale, sickly faces with shaved heads. But there’s a lot more to this cancer-killing drug regimen than its most talked about side effects. Because after you go through chemotherapy, it changes you in all sorts of ways… and while some of those changes can be unpleasant, others can be extremely positive and life-affirming.

Because nothing beats chatting with someone who can share their first-hand knowledge, Folks spoke to two cancer survivors about their experiences: Allison St. Pierre, who was diagnosed with breast cancer just after her 52nd birthday in 2014, and Eric Fishman, who was 35-years-old when he received a diagnosis of testicular cancer in 2017. Whether you’re a newly diagnosed patient looking at treatments, a friend or family member of someone with cancer, or just curious about what geting chemo is like, here’s what you need to know about chemotherapy.

Every Chemo Treatment Is Different

For starters, chemotherapy is not a one-size-fits-all drug–it’s actually a mix of chemicals (a drug cocktail, if you will) that are combined together based on the diagnosis, stage of cancer, and best course of care for each person. Although an oncologist will recommend the mix and intensity of treatment, the patient is the one who makes the final decision on exactly how aggressive they want treatment to be.

Some regiments of chemo can be extremely intense: Eric had three rounds of treatment, each consisting of a week of daily treatments followed by two weeks mostly off except a treatment on Tuesday. Others can be relatively laid back: Allison received one day of treatment a month with a month off between treatments, which is more common.

Almost Everyone Gets A Port

No, not the dessert wine. Because chemotherapy is such a potent mix of chemicals, inserting it directly into a small vein could dissolve the vein. So before chemotherapy begins, patients undergo a brief outpatient procedure to have a thin tube, called a catheter, placed directly into a large vein, often near the heart. The port is then connected to the catheter internally and has an external opening for chemotherapy delivery. Instead of a nurse continually pricking a patient to find a large, working vein, a special needle is placed directly into the port and then connected to an IV holding the personalized chemotherapy cocktail. Ports can also be used to draw blood.

There are exceptions, of course. Depending on the type of cancer and treatment used, some patients do receive chemotherapy through an IV, or get injections, or even take capsules orally. But for most patients, you’re looking at getting some hardware installed.

Every person’s chemo is different. Creative Commons photo: Beverly Yuen Thompson

What A “Typical” Treatment Is Like

For those who receive their chemotherapy drugs intravenously, they must visit a lab for each treatment. Before chemotherapy begins, a nurse will weigh the patient and take a blood sample. If their blood count is too low, treatment may be delayed until their immune system strengthens. For those with ports or a catheter, the line must be cleared before the new chemotherapy treatment is given. This can leave a bad taste in the mouth, so many patients bring mints or a strongly-flavored drink to avert the taste.

The amount of time it takes for the chemotherapy to drip through the IV and into the body can vary. Allison was typically done in two hours, while Eric needed three. Most patients will pack a “chemo bag” full of items that will provide them with comfort and help pass the time. While each bag is personal, some common items can include a large water bottle, a jacket and/or blanket, books, and electronic devices (with headphones!) to listen to music or watch movies.

Patients May Lose More Than Just Their Hair

Chemotherapy doesn’t only eliminate cancerous cells, it’s designed to kill all fast-growing cells. So not only do you lose the hair on your head, you can also lose all your body hair… and when it grows back, it may, at first, be very different than before. For example, formerly coarse hair may grow back baby fine, and once wooly legs may be almost bare. Some people even lose the nails on their fingers, or experience skin discoloration by developing splotches that look like sunspots. And while for most, these changes are temporary, some people can end up permanently changed by chemo.

What’s the trick to getting through these changes? Alison says: “Take charge!”

“When you have cancer, you feel you like you don’t have any control,” Allison explains. “My daughter and I made a party out of shaving my head. It was long, so she chopped it in stages to see what it looked like. I even had a mohawk at one point!” It can even be fun to accessorize around a newly bald head: for example, by trying out wigs with cool new hairstyles, or embracing a range of fun scarves and hats.ys to exert a bit of control.

When you have cancer, you feel you like you don’t have any control…Take charge!

Chemotherapy Will Change What You Eat

Chemotherapy causes nausea and vomiting, leading to weight loss, but that’s not all. It also changes your taste buds. Lasting up to five days after treatment, everything Allison ate had a distinct metallic flavor; Eric, on the other hand, completely lost his ability to taste after treatment. Both are common side effects from chemotherapy.

In addition, because of nausea and possible mouth sores, “heavy” foods (like burgers, pizza, or steak), sodas and sweets are often unappealing to chemotherapy patients. Many will stick to a diet of bland foods, like mashed potatoes, oatmeal, and crackers.  Luckily, taste buds often return to normal in between treatments, and once chemotherapy is complete, food will taste like food again.

Finally, when you undergo chemotherapy, you need to be really careful about where you’re buying your food. Since outbreaks of salmonella and E.coli are on the rise, patients may now be advised to avoid fresh, raw produce, which could prove deadly to a person who cannot fight off bacteria. Say so long to the farmer’s market, at least until treatment is done.

Your Life Still Continues Normally During Chemo

Most chemotherapy plans involve periods of treatment, followed by periods of relative normalcy, where no chemotherapy is had. During treatment periods, the symptoms can keep patients homebound, but in those weeks between, most patients resume their “normal” lives as much as possible.  In Allison’s “two good weeks” between rounds, she worked at her local community theater, shopped at the grocery store, enjoyed meals out with friends and went to the movies. She even remembers the satisfaction of having enough energy to clean her kitchen.

Chemotherapy Can Change Your Personality And Your Politics

For Allison, going through chemotherapy resulted in a complete mind shift. She was raised to be polite, not speak out, and to put others first. But chemotherapy made her realize that maybe she needed to spend more time advocating for herself, and speaking up when things were wrong. “Cancer completely upended my life and made me outspoken,” she says. Why? It all had to do with the feeling of being helpless during the negative side effects of treatment, and not wanting to feel that way in her day-to-day life. “I started looking at the big picture and began to view things differently. I’m a Southern girl and was taught not to talk about politics, but now I’m speaking up.”

Chemotherapy Also Changes Friendships And Provides Opportunities For New Ones

Chemotherapy can, weirdly enough, be a good time to bond with your friends, or even make new friendships.

For Eric, friends took turns accompanying him to chemotherapy treatments, and helped support his wife and children. One buddy in particular stands out. “My friend’s dad had recently died of cancer,” he recalls. “While I was going through chemotherapy, he called often to check in on me: he called more than anyone else.  We’ve become much closer now. He’s never been a mushy guy, but now he’s much mushier towards me. Even though the treatments are complete and I no longer have cancer, he still calls me often to check in. And now, it’s not just to ask how I’m feeling. Before, I was usually the one who called him, but now he calls me much more.”

Allison also made numerous new friends during her chemotherapy treatments. And not all of those friends were local. While she did attend some support group meetings, the women she met mostly older, many of Allison’s closest friends were made through online support forums for fellow cancer patients.

Staying positive and making friends is important to make it through chemo. Creative Commons photo: Komen Austin

Attitude Is Everything

Both Allison and Eric stressed that positive thinking and staying away from undue negativity was the major thing that brought them through what they call “the hell of chemotherapy.”

For Allison, taking a “media fast” was very important. Instead of watching or reading the news, she chose to read the Bible, write in her journal, walk in nature, participate in yoga classes for cancer patient, and join support groups.

Eric approached it differently. He kept his distance from negative friends and avoided as many conversations about cancer as possible. At chemotherapy treatments, he and friends would while away the time by watching funny movies together. (In fact, one time, Eric was laughing so uproariously during treatment that a woman next to him asked if he’d gotten extra drugs in his chemo cocktail.)

The walkaway from all this? If you’re a chemo patient, do whatever it takes to feel good about the world during this time; if you’re the friend of a patient, follow their lead, and be as upbeat as possible.

There Is

 A Light At The End Of The Tunnel

It might feel like chemo never ends, but it does. And life does get back to normal, eventually, even if it can take a long time.

When he received an all-clear from his oncologist, Eric says that he still didn’t feel “fully normal” partly because he still looked sick. It wasn’t until months later, when his eyebrows grew back, that he started feeling like he was really better.

Allison’s recovery was faster.  Starting just a few weeks after her last treatment, she began to see new hair, which she photographed weekly as a reminder of the progress. For her, this served as proof that she was recovering, even though it seemed slow. She created an electronic photo album called “Hair,” and as soon as she felt it was long enough to publicly display, she donated her wigs to a local cancer organization.

When your chemo ends, there can be a tendency to feel a certain degree of survivor’s guilt: to ask yourself, why did you make it, when so many others don’t? To this, Alison says that we should all remember a song from one of her favorite musicals, Hamilton.

“There’s a line in a song sung by Aaron Burr called ‘Wait For It,'” she says. “It goes, ‘If there’s a reason I’m still alive when so many have died, I’m willing to wait for it.’ I don’t know why I’m still here while others are not, but we have to focus on the positive and hang on to that.”

Creative Commons photo at top by North Carolina National Guard.

Explainers

How To Deal When You’re Diagnosed With Type 1 Diabetes

So you or someone you know has been diagnosed with Type 1 Diabetes. Here, in plain English, is what you need to know.

Type 1 Diabetes (often abbreviated as T1D) is a bummer. If you or someone you care about has been recently diagnosed, I’m sorry.

But diabetes doesn’t have to slow you down. It doesn’t have to end anything. You can still do precisely what you want to do; you just have to understand what you’re dealing with.

Here, in plain English, is what you need to know about Type 1 Diabetes, and how to live with it.

What is Type 1 Diabetes (T1D)?

What Islets of Langherhanslook like.

T1D is an autoimmune disease. That means your body mistook part of itself for a bad, sickly thing, and attacked it. In this case, your body is attacking clusters of cells in your pancreas called the Islets of Langerhans, which create insulin, a hormone that regulates how much glucose (sugar) is in your blood.

Too much glucose poisons your blood, so if your pancreas can’t make enough insulin, you need to inject yourself with artificial insulin to stay alive.

How Much Insulin Should I Take?

Consult your doctor, but in general, every time you eat, you’ll calculate the correct amount of insulin based on the how many grams of carbohydrates you’re eating. This is called an Insulin-to-Carbohydrate Ratio, or “IC Ratio.” For example, my IC Ratio is 1:12. That means I give 1 unit of insulin for every 12 carbs I eat or drink.

What Happens When My Blood Sugar is Too Low?

Low blood sugars (“hypoglycemia”) happen when you have too much insulin in your system. Hypoglycemia you dizzy, anxious, hungry, and probably quite sweaty. In the worst cases, low blood sugars can lead to seizures. Not much fun.

You treat low blood sugars by consuming sugar, and because lows can strike at any time, you should carry sugar with you at all times from now on. Some folks carry glucose tablets, others lug around juice boxes. I prefer gummy bears.

Meet two of your new best friends. Creative Commons photo: Robert Occhialini

What Happens When My Blood Sugar is Too High?

High blood sugars (“hyperglycemia”) strike when you don’t have enough insulin in your system. Since your blood is poison when you’re hyperglycemic, your body tries to replace its fluids, which makes you very thirsty and prone to peeing a lot. Highs, if left untreated, can lead to Diabetic ketoacidosis (DKA), which is dangerous.

You treat highs by taking the appropriate amount of insulin—again, consult your doctor. Drinking water and going for a walk will help the insulin do its work.

Why Did My Body Attack Itself? Why Do I Have T1D?

We don’t really know. Genetics play a role, and viruses can be “environmental triggers,” but science has given us no clear or final answer yet.

What’s Been Taken Away From Me?

Very little. You can still do pretty much anything you wanted to do as a non-diabetic. You can be a doctor, a scientist, an artist, or an NFL player. You can still go hiking, travel the world, and raise a family. You’ll be OK!

Ask Abby Pepper, who biked from coast-to-coast when she was 18 after being diagnosed. People with T1D can do anything.

Could Anything Have Prevented This?

No. This is not your fault.

I’m Feeling Sad, Angry, and Confused After My Diagnosis. Are These Feelings Typical?

Yes! Diabetes sucks. There’s no getting around it. There’s a lot to learn, some suffering to undergo, and a lot of work to do. This means you’ll need to be disciplined and keep your spirits up. But not right away. It’s totally okay—and even normal!—to be sad, angry, and confused for a while. To show yourself that you’re not alone, find a community of diabetics as soon as you can.

Where Can I Find a T1D Community?

You have options! If you’re interested in walks, bike rides, runs, galas, cookouts, etc., The Juvenile Diabetes Research Foundation (JDRF) holds plenty of events. The American Diabetes Association (ADA) does, too. Here’s their calendar.

T1D communities are flourishing online, too. If you want to read personal essays from T1Ds about everything from sports to fashion to diabetes research, I recommend Beyond Type 1 and Type One NationFolks (the site you’re reading!) has a lot of inspiring stories about people with diabetes in its archives too.

If you have specific questions, or just want to get involved with some T1D forums, you can find support groups here, here, and here.

Do I Need a New Doctor?

Yes.

You need to find an endocrinologist (“endo”), who will be your “diabetes doctor,” helping you figure out your treatment, setting you up with a diabetes educator, and writing your prescriptions.

Also, make sure your primary care doctor knows all about diabetes. This might seem like a no-brainer, but I’m wary about this because of personal experience. A few years ago, I moved to a new place and met a new doctor, who asked repeatedly, “Are you sure you have diabetes?” I was pretty sure, after 7 years of the disease. He remained suspicious.

I didn’t go back. You can’t be treated by someone who doesn’t understand your condition.

Diabetes affects every facet of your health. Make sure that your primary care doctor’s knowledge of T1D is broad and deep.

This glucose monitor is one of the gadgets you’ll need to familiarize yourself with if you have T1D. Creative Commons photo: Mike Mozart

What’s the Difference Between Type 1 and Type 2 Diabetes?

You’ll probably have to explain this a lot.

Basically, Type 1 is an autoimmune disease, and Type 2 is not. Type 2 Diabetics develop a cellular resistance to insulin, whereas Type 1 Diabetics lose the ability to produce insulin altogether.

In short, T1D has to do with insulin shortage, and T2D has to do with insulin resistance.

Can I Still Eat Sugar?

Yep! You just have to take insulin for it.

Will Exercise Help?

Very much. While exercise won’t reverse the symptoms of T1D, it will make your body more sensitive to insulin, which is a good and healthy thing.

Are My Children at Risk for T1D?

There’s no genetic guarantee of T1D, just as there’s no genetic guarantee of red hair.  However, the child of a Type 1 Diabetic is more likely to develop the disease than the child of a non-diabetic.

So the answer to this question is “Yes,” but the odds of your children being diagnosed with T1D remain small.

What is the Honeymoon Phase?

For a while, you’ll retain some pancreatic function. That means your pancreas still works a little bit, and you won’t need as much artificial insulin. This period of time is called “The Honeymoon Phase,” and it can last up to a year.

Should I Hope for a Cure?

There’s no cure coming soon, but there are hopeful things on the horizon. Several research teams are hard at work on promising treatments and technologies: I’ll name three.

ViaCyte has engineered stem cells to become beta cells (insulin secretion cells). Their treatment would put a small, semipermeable capsule in the skin of your upper arm that (a) produces all the insulin you need, (b) protects the beta cells from autoimmune attack, and (c) would need to be replaced every few years.

Semma Therapeutics works with “pluripotent” stem cells, which can replicate indefinitely. That’s an exciting quality, because if their treatment works (it’s way too early to tell), you’d have a self-sustaining population of beta cells!

Sigilon Therapeutics has developed excellent capsule technology. They might have the best shot at keeping your new (artificially implanted) beta cells safe.


I’ve omitted lots of important stuff (talk to your doctor!), but I hope the ground beneath your feet now feels a little more solid. Remember, Type 1 Diabetes is nothing to take lightly, but if you’re up to the challenge, you’ll be okay. Get educated, find good doctors, be honest about how you’re feeling, and plug yourself into a nourishing community.

Don’t let this cramp your style! Your prospects are as bright as they ever were.


Creative Commons photo at top by JDRF

Explainers

What I Wish People Understood About Having Celiac Disease

Stop grouping us with the posers. Not everyone who is eating gluten-free is jumping on the latest dieting bandwagon. Here's what you need to know about celiac disease.

I get it. You’re tired of hearing about the gluten-free fad. I am too.

It seems everyone is going gluten-free these days, from your BFF to celebrities like Miley Cyrus. Some believe a wheat-free diet will put them on the fast track to weight loss. But like any diet trend, followers might stick to it strictly one day, then take a “cheat day” and eat cake the next. For these people, gluten-free is a choice that they can make, a diet rule they can break.

But for sufferers of Celiac disease–a serious autoimmune disorder that can lead to intestinal damage and other severe health problems, such as multiple sclerosis, infertility, and intestinal cancer—going gluten-free isn’t a fad. It’s the only way we have to manage our disease. And a dramatic increase in recent years of people claiming to be “allergic” to gluten when they’re really only gluten-free by choice has caused a backlash that is catching people who have Celiac disease, like me, in the crossfire.

From a certain perspective, it’s understandable that this backlash has occurred. When non-Celiac diners insist their appetizers must be gluten-free—which requires special attention and extra work for the kitchen staff, such as changing gloves and thoroughly cleaning their workstation—but then proceed to order cheesecake with a very gluten-filled crust for dessert, restauranteurs rightly get pissed.

But because of this, when a true Celiac sufferer sits down to dine, the staff’s patience for our requirements is already long lost. When everyone cries wolf, after all, it’s easy enough to slip into think that wolves simply don’t exist.

Trust me. I’d love to not worry about having to stick to a GF diet. But it’s not that simple. There is no magic pill for Celiac disease. All we can do is avoid ingesting gluten, the protein found in wheat, rye, barley, and triticale). So in the face of what I see as some widescale misinformation about people with Celiac disease who have no choice but to stick to a Gluten-Free Diet, no matter how others abuse it, I wanted to dispel some of the misconceptions.

I’m not “picky.”

If I could, I’d eat all the pizza. I’d drink the beer. I’d devour the chocolate cake.

Well, perhaps I am particular when it comes to things like wine, art, and words. But I love food. And I cherish the chance to try new things. I don’t avoid gluten-filled foods because I’m “picky.” If I could, I’d eat all the pizza. I’d drink the beer. I’d devour the chocolate cake. I’d go to Italy and bury myself in a giant bowl of handmade pasta. But I can’t. If I ingest even a small bit of gluten, it will trigger an autoimmune response and my body will essentially attack itself, causing severe headaches, inflammation, exhaustion, and damage to my intestinal villi (the tiny projections found on the folds of the small intestine, responsible for absorption of nutrients).

I’m not on a weight-loss diet, and I can’t “cheat.”

If this were a diet by choice, I’d have happily ditched it long ago! It’s not the calories I’m concerned with; it’s the chaos and damage gluten causes my body that keeps me from “just having one bite” of my grandmother’s award-worthy apple pie, my mom’s best banana bread, and that delicious dessert you spent all day baking. Trust me, I want to taste them all. But doing so will cause much more than a calorie gain; the reaction to the gluten protein will inflict actual pain.

I’d prefer not to talk about what happens if I eat gluten.

It’s not you; it’s me. People with Celiac experience a variety of symptoms when they ingest gluten. I do appreciate that you want to understand more about this disease, but I’d prefer to spare us both the gory details, especially if it comes up over dinner.  I don’t want to leave you totally hanging, so think of it like this: Have you ever had really bad food poisoning? How did you feel? What was your body’s reaction? Not the best topic for a dinner conversation! Add to that a headache, fatigue, inflammation, and damage to the small intestine, then multiply all of the above by about five days—that’s what it’s like if I eat gluten.

I would rather go hungry than risk getting sick or inconveniencing you.

Now that you know what happens if I eat gluten, you can understand why I avoid it at all costs. That’s fairly easy to do when I am cooking at home, but restaurants and social events are landmines for Celiac sufferers. Catering staff are often temp hires with limited knowledge of what’s actually in the dishes they’re serving. Chefs may be unavailable for questions during their shift or not even on site during an event. I am always hesitant to ask people to accommodate me. Event planners and brides-to-be already have their plate full, and I don’t want to pile on any more special requests. But when I don’t communicate my food restrictions, I am left with limited or no safe food options. So when I attend big events and weddings, I may go the whole day without eating a meal because the consequences of ingesting gluten are not worth the risk. And this is why…

I pack snacks in my purse like a chipmunk in its cheeks.

Open up any of my bags or purses and you’ll likely find nut and fruit bars, chips, and other non-perishable snacks—or at least remnants of them. Depending on where I am in the world, gluten-free foods aren’t always readily available. And going long periods of time without eating can trigger headaches, even in people that don’t live with an autoimmune disease. For Celiac sufferers, those headaches can be much more severe. Folks with Celiac disease often endure frequent migraine attacks. I experience a rare and debilitating type of migraine attack that mimics a stroke, so I’ve learned to pack snacks, whether I am just traveling to a nearby town or flying to a foreign country. This munchies-hoarding habit has become so obvious (and amusing) to my traveling companions, it even earned me the nickname “squirrel” while on safari in South Africa.

It runs in the family.

Celiac disease is hereditary, and it is particularly prevalent in Ireland, due in part to the history of gluten (or lack of) in Irish diets prior to the famine. I am nearly 50% Irish but didn’t realize I shared so much more than my green eyes, fair skin, and freckles with my ancestors until I visited Ireland a couple of years ago. Nearly every restaurant had a Celiac menu, and no one batted an eye at my requests for gluten-free foods.

I’ve eaten bread.

You can’t judge a gluten-free person by their gluten-filled past.

And pasta and pancakes and crackers—in the days before I knew any better. Celiac diagnoses were unheard of when I was growing up, so I devoured chocolate birthday cakes, peanut butter sandwiches, and a variety of gluten-filled goodies like many other American kids did. I also had a lot of unexplained stomach aches and migraines. You can’t judge a gluten-free person by their gluten-filled past. Many Celiacs suffer for years before identifying this autoimmune disease that’s responsible for their health problems.

Surgery, infections and emotional distress can trigger Celiac disease.

For some people, the symptoms of Celiac disease become “active” after physical or emotional changes or traumas, such as surgery, viral infections, and even pregnancy and childbirth. So it’s possible for a person to not exhibit symptoms early on in their life, but then, after an infection or trauma, experiences extreme physical reactions after ingesting gluten. When I lived in Thailand about 10 years ago, I was hospitalized with a viral infection. While I had hints of Celiac symptoms throughout my life, they showed up in full force after my hospital stay. It was only once I returned to the US a year later—with debilitating Celiac symptoms—that I started seriously searching for a cause.

I’m just as tired of the gluten-free diet trend as you are.

While I can appreciate that the fad has inspired many restaurants to jump on the bandwagon and add gluten-free foods to their menus (thus making it easier for me to find Celiac-friendly options), treating “gluten-free” as a phase or craze rather than a disease is dangerous. Of course, the restaurants aren’t entirely to blame. The framing of gluten-free as a lifestyle choice and diet trend rather than recognizing it as a necessity for gluten intolerant people has incited negative backlash, resulting in a blanket critical approach to anyone who dares declare themselves gluten-free. Some critics have even gone as far as writing articles with clickbait and harmful headlines, that reinforce criticism of gluten intolerance, making it more difficult for people that are actually living with this autoimmune disease to get the help and accommodation we need.

Frustrated by indecisive diet hoppers and the extra time, attention, and money spent on accommodating gluten-free requests that may or may not be legitimate, many restaurant servers and chefs have become indifferent and even angry. Servers often visibly roll their eyes or let out an irritated sigh to indicate their annoyance at my gluten-free inquiries. And some chefs feel it’s not their responsibility to label foods that contain gluten. But it’s not Celiac sufferers or restaurateurs that are the root of the problem.

Fairweather gluten-free fad folks are creating confusion and mistrust and costing restaurants extra work, money, and frustration.

Fairweather gluten-free fad folks are creating confusion and mistrust and costing restaurants extra work, money, and frustration. And in turn, this is causing true Celiac sufferers actual physical damage. Numbed by the unnecessary demands of fickle diners, restaurant staff may consequently dismiss legitimate gluten-free requests and fail to take proper precautions when preparing the food. I have been “glutened” (unknowingly served gluten and then suffered the painful consequences), more times than I can count. Each time my auto-immune response is triggered, more damage is done.

I don’t want to “just stay home.”

The solution some people propose is that I should simply never eat out. The implication that Celiac sufferers are a burden and we should isolate ourselves is disheartening at best. And for some Celiacs, extended isolation can lead to depression.

A more sustainable and healthy solution requires all three groups (Celiac sufferers, fad dieters, and restaurateurs) to work together. Communication, honesty, and a bit of compassion are key:

  • Celiac sufferers need to clearly communicate with servers about the severity of their disease and accept that some restaurants are not always able to accommodate. Not because they don’t want to, but often because it’s impossible or cost prohibitive, particularly for smaller, family-run businesses that lack the time, space, or money to do so. For example, an Italian restaurant where flour is quite literally flying through the air is perhaps not the best place to insist on a fully gluten-free meal. I tend to avoid Italian restaurants (unless they are known to have GF options) for this reason—for my own safety and out of respect for the cuisine, chef, and staff.
  • Dieting diners need to be honest, too. If they have a genuine intolerance or health concern about consuming gluten, they should follow the above suggestions for Celiac sufferers. Otherwise, if they don’t require a strict gluten-free diet, they should not burden restaurants with the same extensive preparation that a completely allergy-free meal requires.
  • Restaurants came aim to have at least a few clearly labeled gluten-free options on the menu, so that no substitutions, extra work, further discussion, time, or expense is required. In this case, gluten-free folks know exactly what is available and they also accept the responsibility that should they choose to order outside of the GF-labeled options, they do so at their own risk.

I wish you wouldn’t doubt the legitimacy of this disease just because you can’t see it or don’t understand it.

What’s to be gained when people who don’t suffer from a disease try to prove it doesn’t exist? Celiac disease is a very real, very serious autoimmune disorder.

Some people seem hell-bent on proving that gluten intolerance isn’t real. Strangers and even friends have tried to debate the validity of my condition. What’s to be gained when people who don’t suffer from a disease try to prove it doesn’t exist? Celiac disease is a very real, very serious autoimmune disorder. Even that clickbait article above agrees with me on that. I know it can be difficult to understand the inner workings of someone else’s intestines, but you can take my word for it or—if you are genuinely interested, you can take some time to learn more about it.