Chronic Illness

Body Image After An Ostomy Bag

After ulcerative colitis, Crossfitter Lilly 'The Legend' Polivoda had to learn to love her body on different terms.

For five years, Minnesota-based Lilly Polivoda was obsessed with perfecting her body. A CrossFitter, she was dedicated to lifting hundreds of pounds overhead and digging deep to drive her body harder than she had the day before.

On the cusp of 2018, however, she discovered she had ulcerative colitis (a type of inflammatory bowel disease). Her 145 pounds of solid muscle became atrophied, leaving no resemblance of her former body behind. After over four months of battling severe illness, she opted for an ileostomy: A surgery that creates an opening at the small intestine that leads to the outside of the body to remove waste. The procedure would stop the symptoms, but would also require that she wear a pouch on her abdomen to collect bowel movements.

Here, Polivoda opens up about her post-surgery mind and body.

Now that you’ve had the ileostomy, can you register for CrossFit competitions again?

I’m still trying to find a balance after my surgery with my physical activity. If we’re being 100 percent honest, I think my balance in general was off when I was trying to push my body so hard. I’d workout six days a week; I’d be putting my body through the ringer all the time because I was trying to build muscle. It’s too much, I think, for a person’s body to go through on a regular basis. So, my body goals have shifted tremendously.

I’m guessing your mindset has shifted in other ways as well: What were some insecurities you had about your body before your surgery?

I guess just your run of the mill: My thighs are too big. Or, if my body wasn’t where I wanted it to be physically, I would often feel a little bit insecure. And now I’m just thinking: Really? Those were the things you were insecure about? So it’s been a massive mindset shift.

[N]ow I’m just thinking: Really? Those were the things you were insecure about?

But like many people, don’t you still struggle–at least some days–with maintaining a positive body image?

No, it’s funny because in certain ways it’s gotten a lot better. For example, if I put shorts on now and I have a bunch of cellulite, I don’t care. But when I was working out a lot, I did care.

If anything, I think my ostomy has given me a bigger sense of insecurity underneath my clothes than when I have clothes on. The bag is definitely something you can’t ignore because it’s physically there all the time. It also limits me in a few different ways: For instance, now, I’m not going to go spend a day at the beach, whereas before I probably would have. From a practicality standpoint, if I get really sweaty or wet, the bag could leak. So, there are all these other insecurities and anxieties that come with living with a bag on your stomach.

Also, I actually don’t really love to post my bag on my Instagram anymore. I did in the beginning because it was getting me a lot of attention, and then I realized that that’s not really attention that I even wanted.

Why don’t you like to talk about your ostomy bag as much?

It’s not that I don’t like to talk about it; it’s just that I made it such a focus on social media for a time. I’ve had 28 years without it and then one year with it, so I don’t want the bag to be the first thing people see all the time. I also ended up unfollowing a lot of people that had the surgery and posted on it all the time because I wanted to move on mentally from the chronic illness scene.

Lilly Polivoda made a point at first of posting photos of her ostomy bag on Instagram, but over time, she found it limiting.

Interesting. How come?

I just got to the point where my confidence had to come from myself and not anybody else. Essentially, I had to go more internal instead of looking for the external stuff. But, I’m really glad that the external stuff was there because that really did help me gain the confidence to get the surgery.

How do you go about finding confidence from within yourself?

I just got to the point where my confidence had to come from myself and not anybody else.

Throughout my life, I’ve told myself I can do whatever I need to do. I build confidence by setting little goals for myself and then reaching them. I can just say to myself: I’m going to go for a 15-minute walk today, or, when I was in Crossfit, make goals to lift heavier weights. Once I reach my goals, my confidence improves: My body’s capability affects my mindset about my body.

Did you worry about finding a relationship after your surgery because your body had changed so dramatically?

I did! It really freaked me out. I just thought: How am I going to navigate this? But I have a little strategy: I posted a few of the ostomy-related pictures on my Instagram. So, at least if people creep on me, they will know about my situation without my having to go super far into it. But I don’t want it to be the highlight of my Instagram.

Did finding a relationship change how you felt about your body?

At first, I was very nervous that people wouldn’t be accepting, and I’m sure there are probably some people out there that would have that viewpoint. But then I realized if somebody does have that viewpoint, they’re not worth my time anyway. So, I’ve been finding people that are more accepting of people just the way they are, and who don’t just see me for my physical attributes. And, if I’m being completely honest, the two relationships I had after my surgery have been better than the ones before.

Lastly, what do you wish you could have told pre-surgery Lilly about liking your body before you had the surgery?

That I am more than just my body.

Chronic Illness

Just Because I “Look Great” Doesn’t Mean I’m Not Sick

If you've ever complimented a chronically ill person on their appearance when they mention their health, it's time to stop.

“How have you been?” a family friend asked me at a party last year.

I’d come to dread this question. The customary answer is ‘good,’ but saying that would have been a flat-out lie. Because due to a debilitating cystitis (also known as a urinary tract infection) that none of my doctors could seem to treat, I was living with my parents again, spending all day on the toilet while experiencing chronic symptoms like a irregular heartbeat and pressure in my head.

I couldn’t sleep, I couldn’t think, I and I couldn’t get excited about anything I used to. I definitely wasn’t “good.” So I said: “I’ve been dealing with some health issues.”

She meant to be nice, but I hated her response.

“Well, you look great,” she said, as if whatever health issues I was having was of secondary importance to being attractive. As if being healthy was somehow less important than looking healthy.

I didn’t know what to say. Should I explain to her that someone can look good and be sick? Was she implying that as long as I looked great, it didn’t matter that I was sick? Either way, with those four words, my friend closed the door on me opening up about my health issues. I just no longer felt like I had a sympathetic ear.

So I just smiled and said: “Thanks.”

This encounter wasn’t a one-off. I’ve been told I “look great” by countless people when I made even a cursory mention of my health issues.

A life coach I started seeing told me it was funny to hear me talk about my illness, which was eventually diagnosed as chronic Lyme disease, when I “looked gorgeous.” A friend told me I seemed better because I was “glowing” when I didn’t feel better at all.

No one looks like they have Lyme disease, so I never expected people would be commenting on my appearance.

Even before my diagnosis, I was no stranger to this type of superficial comment. As an eating disorder survivor, I was well-used to people telling me I “don’t look sick.” But at least eating disorders are linked to appearance. No one looks like they have Lyme disease, so I never expected people would be commenting on my appearance.

Obviously, I was wrong.

Culturally, the stereotype when someone is chronically ill is that they will appear ‘sickly’, which means they’ll be thin, pale, have bags under their eyes, and so on. But the truth is, of the 45 percent of Americans who have a chronic illness, and few fit that images. In fact, most chronic illness is invisible. So why do we, as a society, spend so much time talking about the visuals of illness?

Telling someone who has an invisible illness that they “look great” comes across as a non sequitur at best, and as skeptical at worst. Not that I really think that the people who have told me I’m looking good were trying to imply that I wasn’t really sick. More likely, they just wanted to cheer me up, using my appearance as something they could point to that things weren’t as bad as they seemed.

Telling someone who has an invisible illness that they “look great” comes across as a non sequitur at best, and as skeptical at worst.

The problem with using someone’s appearance as a barometer for their health is that a person’s looks can fluctuate for all different reasons. For example, when I was at my worst dealing with Lyme disease, I was getting vitamin IVs, which happen to be good for your skin and hair. The “glowing” effect some people had picked up on was just a side-effect of my treatment plan, not proof that I was getting better. And besides: to suggest that looking great is even relevant when someone’s dealing with a chronic illness trivializes what they’re going through.

It also feels sexist. It’s impossible to tell, of course, but I’d venture a guess that fewer people would be focused on my looks when I bring up my illness if I were a man. As a survivor of an eating disorder, I know better than most how much of a premium society places upon a woman’s physical appearance… and how men are often times held to a double standard.

The real reason you shouldn’t tell a chronically ill person that they “look great” is because it shuts down the conversation.

Regardless of intentions, though, the real reason you shouldn’t tell a chronically ill person that they “look great” is because it shuts down the conversation. When someone has trusted you enough to open up about their illness, even in passing, your first response should be to express sympathy and ask compassionate questions… not to focus on the most superficial aspect of the experience. Saying “you look great” to a chronically ill person sends the message that you want to keep the conversation on a surface-level only, when they’ve already trusted you to let them into their experience a little.

So next time someone opens up to you about your health, be mindful about what you say. “But you look great!” sound innocuous, but it’s a turn-of-phrase that can make the person you’re talking to feel even more alone and isolated than they already do. As a chronically ill person, I don’t want to be told I look great. I want someone to be in it with me, and accept me for who I am.

Chronic Illness

How I Learned To Stop Worrying, And Accept Being Bald

As a balding woman with PCOS, learning to let go of my hair was the first step towards having the hair of my dreams.

It was a posh salon, and I had no business being there. Because salons are for people with enough hair to do something with, and my sparse strands barely qualified.

Still, there I was, hoping a world-class haircut could give me some self-confidence.

I waited awkwardly on the low leather chairs, refusing offers of cucumber water and chamomile tea from spiky-haired men. Surrounded by mirrored walls, I felt uncomfortable, doing whatever I could to avoid catching a glimpse of myself.

Eventually, the stylist summoned me to her chair. She was blonde and eastern European, shaped like Barbie’s mother-in-law. Under her hyper-judgmental gaze, I sweated and squirmed.

“Hmm, I’ll see what I can do,” she said, doubtfully, as a woman a few yards away took a surreptitious photo of me with her phone.

That was four years ago. It was the last time I had a proper salon hair cut. Not that what I walked away with would make anyone’s style book.

Never Had Much Hair

As a woman with a complex of dysfunctional hormone symptoms called polycystic ovary syndrome (PCOS), I never had much hair.

At best, I had a normal amount, but the actual body of my hair was so fine that the most I could ever do with it was a skinny pony tail or flaccid 1980s perm. But after fertility treatments and pregnancy, even this meager supply of hair failed me. Now I was no longer thinning: I was balding.

Wear hair? That is an option?

After my humiliating salon experience, I turned to the the internet to see how other women with PCOS were handling hair loss. There, I discovered a whole community of women in their 20s, 30s, and 40s trading tips for how to conceal hair loss and “wear” hair.

Wear hair? That is an option?

The author, Anna Beyer, “wearing” her hair.

Learning To “Wear” Hair

Indeed, it was.

After feeling helpless since my 20s, I suddenly found myself exposed to an secretive subculture of other youngish women, all struggling with thinning or balding scalps. Navigating this hair loss dark web would teach me how to use fake hair, but to do so, I would have to get over my fear of exposure—of the fear that someone who had known me for years might suddenly point out my luxurious artificial locks.

My first fake hair arrived in the mail, long and blonde with dark roots that made it hard to blend with my natural tint. I unboxed it that afternoon with only my 2-year-old daughter watching. Seeing myself in the mirror with a full head of hair for the first time in 40 years, I felt ridiculous. But when he came home, my husband–though confused at first–was supportive, despite the fact that I endlessly badgered him with insecure questions about how I looked.

Still, the early results were promising. So I continued to turn to my members-only hair loss support group, learning more and more about the mysterious art of wearing fake hair.

There are two types of wig-wearers: the out and proud, and the totally undercover.

There are two types of wig-wearers: the out and proud, and the totally undercover. I chose to be open about my new look, which led to several conversations where friends claimed they couldn’t tell that my new hair was not real.

Even if the mean girl voice in my head said they were lying, I kept putting on my hair and playing the part, acting confident. In private, however, my husband endured a thousand questions. Did my hair look good? Did I look weird? Could people tell it was fake?

Unfortunately, I didn’t realize someone else was picking up on my obsession — my now three-year-old daughter

Taking A Step Back

One autumn afternoon, as I brushed my daughter’s long hair into a ponytail, I noticed some tiny, patchy spots.

At first, I couldn’t believe it. Am I just so obsessed with hair loss, I see it everywhere? But the same day, I found little hairballs in and around her bed.

She was pulling out her hair.

Worried I was infecting my daughter with my own anxieties, we met with a child therapist. Accompanied by my husband and feeling under-styled in her mid-century home office, I brought all of my guilt to that first visit, convinced that my own obsessions with hair had cursed my child with an incurable case of trichotillomania.

Deliberately not talking about hair made me realize just how obsessed I had become.

The therapist wouldn’t go that far, but she did agree: it wasn’t helping.

“No more talking about hair — hers or yours,” she said. “Make hair a non-issue.”

Deliberately not talking about hair made me realize just how obsessed I had become. To a certain extent, that was natural: after decades of self-consciousness and embarrassment, I’d finally found a way to appear ‘normal’. But in doing so, I’d imposed my own preoccupation

upon my daughter, teaching her by example to constantly judge her own standard of hair beauty.

For both of us, it was time to break the habit of making such a big deal about hair.

The author without her wig… and hair too is beautiful.

Pressing The Mute Button On Self-Consciousness

Even after I learned to press “Mute” on the hair talk in front of my daughter, the anxious dialogue lives on inside my head every time I leave my house wearing a wig.

“Are they staring? Is my tag showing? Was that compliment sincere?”

Yet eventually, I reached the level of a seasoned hair-wearer by saying “So what?” to these questions. I stopped caring if I was “passing”,  if daily shifts in my hairstyle made people uncomfortable. Instead, I embraced a new world view: I can literally have any hair I want.

By letting go of hair, I now have all the hair.

By letting go of hair, I now have all the hair.

I got my latest haircut under the light of the full moon, a time when we release what doesn’t support our growth. My husband wielded the clippers in our kitchen, and buzzed off the last of my thinning strands, leaving me with a buzzcut.

“That’s badass,” he said. “I did a really good job.”

My daughter, rubbing my fuzzy head, agreed. Whether my hair was thick or thin, long or short, real or fake… it was beautiful, all the same.

Chronic Illness Immune & Autoimmune Diseases

How Diagnosis Can Lead To A Better, Happier Life

Diagnosis doesn't have to be a death sentence. Sometimes it can lead to a better life.

In the two years since my diagnosis with Hashimoto’s,  I’ve have had to reorganize my life to make room for the unique challenges of chronic illness. These alterations to my daily life have been hard and even debilitating at times, but ultimately, they have opened the best possible doors for me.

No one wants to be diagnosed with an illness, but sometimes, it can make you reappraise your decisions, and push yourself to a healthier and happier life than the one you had before.

Sometimes You Don’t Love Your Job As Much As You’ve Convinced Yourself

Two years ago, when I was 30, I was still working in television. Although I initially worked only on projects I loved, it was extremely exhausting and uncertain work. Eventually, I forced myself to take steadier but just as grueling jobs on shows I didn’t like, telling myself I still loved what I did, that it would get better, and that I would stop being so tired all the time.

30 was also the year an onslaught of Hashimoto’s symptoms appeared. For the first 8 months out of that year, I continued to work 12+ hour days. But as the year wore on I started to wear out.  

Hashimoto’s can be insidious. Just when you think you’ve got it under control it bites you – harder.

Hashimoto’s can be insidious. Just when you think you’ve got it under control it bites you – harder. By the time my projects finished at the end of the summer, I was exhausted. I just didn’t have any fuel left to even hustle after another gig, let alone carve out the career I actually wanted. That’s when I decided to use my Hashimoto’s as a catalyst to take on work that would not only fill my need for more rest but also satiate my emotional hunger.

The result of this decision has been a huge blessing. I stopped working in television partly because of Hashimoto’s but it wasn’t the only reason. The other reason was that my interests had simply changed and as a result, I had grown out of the hunger I once had for that business. I had found a deeper sense of meaning in the literary community.

Hashimoto’s was ultimately what pushed me over the edge to switch careers. I worked in publishing last year and later took on freelance writing jobs thereby enabling me to work at my own pace, from whatever location I desired.

Separating The Wheat From The Friendship Chaff

Outside of fatigue, another symptom of Hashimoto’s is depression, and I fell into it hard. I didn’t want to go out with anyone, go out on dates, or even see friends. I felt so drained that all I wanted was to be at home alone. Sometimes friends called, but I mostly ignored them and eventually, those friendships fell away. When I finally came out of my cave with a desirous want of humanity, I found a lot of my lesser friends had moved on

When you’re depressed, the feeling of friends abandoning you can seem like the end of the world, even when you don’t have the energy to see them. Yet, afterward, I realized my depression had done me a favor, separating the wheat from the chaff.

“Who’s showing up for you?” is a question I have found myself asking often, post-diagnosis.

“Who’s showing up for you?” is a question I have found myself asking often, post-diagnosis. Who’s still here? And who’s even cared enough to ask where I’ve been for the past year and a half? It’s an obvious question, yes, but it’s a test that many of our so-called friendships tend to fail. I may not have as many friends post-diagnosis, but the select few I have are the kind who will be concerned enough to call repeatedly if I’m not answering my phone to check in.

When the fragility of life is opened to you through chronic illness, having true friends becomes central in healing and maintain balance.

Living Healthy Doesn’t Mean Pushing Yourself As Hard As Possible

Before Hashimoto’s drained me of strength I worked out religiously four to five days a week. I practiced yoga as well, yet yoga never felt like it could be the workout. It was always a supplement. With this disease in my hand, I had to come to grips with the reality that I don’t always have the energy to push as hard as I could before, which means that I if I’m too tired to work out one day I either let it go or do something gentler. Having to make an adjustment like this might seem like a defeat but it has actually forced me into a more balanced lifestyle. In the past, I was obsessed with exercise and sculpting my body to look a certain way. Now, my gentler workout generally involves some form of yoga and the result of it has greatly aided me in combating the over-exercising mentality I previously had. It has forced me into prioritizing self-care instead, which in the long run has made me feel much better.

[Hashimoto’s] has forced me into prioritizing self-care instead, which in the long run has made me feel much better.

My diet has also changed. Prior to Hashimoto’s I was a vegetarian (partially vegan) for four years. Over time, my diet became stricter and stricter and I became more and more concerned that if I started eating animal products again, I’d blow up like a fish. When I felt strong cravings for chicken or fish or eggs, I’d hold them back. After diagnosis, though, I realized that my urges to eat these sorts of proteins was my body screaming for nutrients I wasn’t getting. I eventually gave in.

Changing my diet has not only given me greater peace of mind, but it’s also given me more energy physically. Since constantly feeling tired is a large symptom of Hashimoto’s, this natural energy boost was very much needed.

Having an autoimmune disorder has given me the fortitude to start an entirely new career in which I am (for the most part) able to work from home and be my own boss. Without it I would probably still be hustling a normal 9-to-5 in TV wondering if I could maybe leave to pursue another passion.

All together, having Hashimoto’s has been a lesson that being diagnosed with a medical condition isn’t always a death sentence. Sometimes, it forces you to make changes that would otherwise lie dormant and unfulfilled.

Chronic Illness Mental Health

Why Are We Ashamed To Need Medication?

Our society's poisonous belief in mind over matter when it comes to medicine isn't just wrong. It's dangerous.

My last year of high school, after struggling with anorexia and bulimia for two years, I was prescribed antidepressants. Talk therapy hadn’t worked, so my therapist referred me to a psychiatrist, who thought stabilizing my mood would improve my symptoms. It didn’t do much at first, but the following summer, my dosage was increased, and I made rapid progress after that. The idea of eating normal amounts or keeping food down didn’t send me into such a panic anymore.

In college, I found a local psychiatrist who wrote me prescriptions for Zoloft. I took it every night, but not when my roommate or friends were around. And I kept the bottle hidden.

My shame over taking medication came partly from shame over why I was taking it. I didn’t want anyone to view me as psychologically unstable. Before being prescribed it myself, I’d assumed that the type of person who took psychiatric medication didn’t fit into society — that they were too delusional or explosive or emotionally labile to get along with others. I’d heard words like “bipolar” and “OCD” and “crazy” used as insults. I feared I’d lose social acceptance if I associated myself with mental illness.

I also felt internally conflicted about this mode of treatment. Had I really gotten better, or had a pill done it for me? Was I triumphing over an eating disorder or just covering it up?

Mind Over Medication?

All the media hype around antidepressants had probably given me this fear, along with the warnings I’d heard from people around me. A friend told me he believed people would grow stronger if they could beat their demons on their own, and that psychiatric medication was an easy fix replacing real self-improvement. He was expressing a prized American ideal: the ability to overcome any obstacle without any help, interpersonal or chemical. I felt weak for being unable to get my health under control using the power of my mind.

My feelings began to shift as I learned that many of my friends, including ones I admired, were also on psychiatric medication. They showed me that anxiety and depression were not weakness or character flaws, but either understandable responses to circumstances or biological traits, similar to physical illness. Either way, they were morally neutral.

I also realized, through a conversation with my therapist, that taking meds didn’t necessarily detract from my ability to deal with my problems.

I also realized, through a conversation with my therapist, that taking meds didn’t necessarily detract from my ability to deal with my problems. To the contrary, they allow some people to face problems that may be too frightening or upsetting to face without meds. That may have been the case with me. I didn’t have the knowledge, tools, support, or emotional stability to face the trauma behind my eating disorder without pharmaceutical assistance at the time.

I ultimately went off antidepressants because I didn’t like the side effects, when I was older and in a better place with my physical and mental health. I did experience a resurgence of anxiety, depression, and urges to return to eating disorder behaviors. But, with a strong group of friends and professionals and the insight I’d gained from years of therapy, I worked past them. Without the medication, I may not have been able to assemble that support system or make the progress in therapy that allowed me to get to that point.

The Stigma Of Medication

I used to think my embarrassment around taking medication was solely due to the stigma of mental illness. Yet years later, when I developed chronic Lyme disease, I felt embarrassed about taking the nutritional supplements prescribed to me in public.

Part of it was that I didn’t like to be reminded I was sick. But I also didn’t want others to see me as sick. People with physical illnesses experience a lot of the same stigma as those with mental illnesses. I feared that my illness reflected some deficiency in me — that I must have done something to bring it on, or else I’d be healthy like “everyone else.”

I feared that my illness reflected some deficiency in me — that I must have done something to bring it on, or else I’d be healthy like “everyone else.” But this “everyone else” is mythical.

This “everyone else” is mythical. 40 percent of Americans have chronic illness, 19 percent of American adults have a mental illness, and 55 percent take a prescription medication. Yet there’s still a pervasive perception that “normal people” don’t have problems that require medication.

“We compare the outside lives of others to the inside lives of ourselves,” explains psychotherapist Colleen Koncilja LCSW. “When we do this, we will most often come up short. People ‘look’ like they have it all together on the outside. We don’t know that they too have moments when they feel like they are crumbling, upset, suffer, or struggle to deal with life’s stressful situations. What we see on Facebook are happy moments, perfect makeup, and the best times of someone’s life. Mental illness and medication for it sure don’t blend with those perfect facebook moments, and the internal pressure to be like everyone else can be so powerful that one denies their illness and their need for treatment.”

Everyone Is Struggling. Everyone Needs Help.

The silence a lot of us are shamed into around our illnesses unfortunately fuels this perception that nobody else is struggling like we are. But it’s not entirely our fault — some of us stay silent because we know others might give us a hard time about taking medication.

“When I have spoken about medication around certain people, or have just overheard their conversations, there are people who believe all of these medications are advertised and prescribed to prop up big pharm,” says Caitie Gutierrez, a 28-year-old community coordinator in Sydney, Australia. “Those type of attitudes make me not want them to know I take medication because I feel that my choice of healthcare will be judged or invalidated.” One 41-year-old professor in California, who wishes to remain anonymous, went for years without telling even his partner he was on antidepressants because he’d heard colleagues say negative things about people with mental illnesses.   

If it helps combat the stigma around physical and mental illness, I’ll keep taking pills in public.

Before we feel completely comfortable talking about our medications and why we need them, the friends and family of people with illnesses need to understand that their loved ones know best what healthcare decisions are right for them, and people in general need to stop making derogatory comments about those with illnesses.

Still, if we ourselves can be more open about our struggles, perhaps they could bring us together rather than cause us to hide. So, if it helps combat the stigma around physical and mental illness, I’ll keep taking pills in public.

Chronic Illness Chronic Pain Disability

The Stigma Of Fun When You’re Disabled

Why do so many people assume that just because I'm in too much pain to work, I shouldn't be allowed to do anything else?

I was sitting in an uncomfortable wooden chair next to my lawyer. My walker sat in the aisle next to me, and I rested my trembling hand on the handle. After over two years of waiting, I was finally there, sitting before a judge at my disability hearing.

The amount of preparation and work leading up to that point had been extensive. I’d filled out form after form detailing my symptoms and the way they impacted my life. Friends and family had written letters of support, and doctors had submitted paperwork. I’d given the Social Security Administration literal boxes full of medical records spanning the four years I’d been sick.

In that time I’d gone from working full time, to part time, to unemployed. I’d seen over twenty-three different doctors and specialists seeking answers and help. I’d taken medication after medication. I’d done therapy, an intensive pain management program, steroid injections, and massage. I’d tried yoga, pool walking, and biofeedback.

And yet still my symptoms persisted. I was in pain daily. Pushing through crippling exhaustion to perform even basic tasks, I struggled with depression, loneliness, and isolation. On top of that, I was barely holding on financially. All my resources were practically gone. So much was riding on this one hour with this one judge.

Are You Chronically Ill Enough To Satisfy A Judge?

He began his questioning, stripping back layer after layer of my life, until I felt exposed to the bone.

What was my diagnosis? What symptoms did I have? How did they impact what I could or couldn’t do? I taught a class two hours a week: if I could do that, why couldn’t I work more than that? What medications was I on? What were their side effects? How many hours, on average, did I spend in bed a week? How could I fulfill my parenting duties if I was in so much pain? The judge even asked if he thought my spouse had divorced me because I was sick.

The judge even asked if he thought my spouse had divorced me because I was sick.

The process of applying for disability benefits is highly demoralizing. Pages of forms ask you to list the activities you can no longer do. You are forced to focus on all the negative aspects of your disability: you’re questioned about everything you do, the way you spend your money, even your relationships.

The paperwork, questions, and explanations all point to the main question the SSA wants to know: Are you capable of working a full-time job?

If You’re In So Much Pain, Why Are You Still Doing Things You Enjoy?

And then, just as I thought were were done, the judge paused and asked one more question.

One of those twenty-three doctors, in the thousands of pages of documents spanning over four years, had mentioned in their notes that I’d had a performance coming up. The judge latched on to that. My heart sank.

The judge asked me what the performance entailed. How long, exactly, was I on stage? What did I have to do with my body?

“5 minutes,” I said. “I use movement, poetry, and video to tell a story. I use my walker or cane during my performances.”

Did I have to carry anything? Did I memorize things to speak? What did I do before the performance?

“I don’t have to carry anything; there are stage managers for that,” I explained. “I can no longer memorize my poems, so they are always pre-recorded. Before the performance I just sit backstage and then after I’m usually shaking and needing to drink a lot of water and compose myself before I go home. After I go home I have to take a long bath and take extra medications. I’m usually in bed for a few days after a performance.”

“If performing takes such a toll on your body, do you continue to do it?”

The judge continued to ask questions; in fact, the line of questioning about my performance took longer than any other portion of the hearing. I was asked more questions about those five minutes on stage than I was about my symptoms, my daily life, or my attempts to work even part-time.

Finally, he asked: “If performing takes such a toll on your body, do you continue to do it?”

Through teary eyes I replied: “Because it is one of the few things in my life that brings me joy.”

The Stigma Of Fun When You’re Ill or Disabled

I wish I could say this was the only time I’ve ever had a conversation like this, but it’s not true. Acquaintances, doctors, and even friends sometimes want to know all the details of how I can do certain activities, if I can’t work. Because our capitalistic society is focused on ‘productivity’, there is an implied (and, all-too-often, spoken) idea that a disabled person who can’t work should deny themselves all the other things in life that make it worth living—joy, meaning, fun.

We live in a society where participating in hobbies or activities just for the sake of joy is not valued. Even well-meaning people fall into this trap, revealing themselves to believe that having fun is a ‘right’ that you need to earn through work. Other disabled people I know have recounted stories about being questioned about everything from going on vacations to taking short hikes to simply going out to eat.

I understand better than most that I have a limited amount of time on this planet, and that I’d better pack as much happiness and meaning into it as possible.

And yet—because daily life for myself and many other disabled people is hard both physically and emotionally–it feels even more urgent to me that we hold on tight to those things that bring us joy.

Happiness isn’t something we earn by going to work every day; it’s a gift we give ourselves. As a friend of mine one said: “We should be allowed to move through the worlds in whatever ways we are capable of.” If I push myself beyond my body’s limits every once and a while to experience joy, that doesn’t mean I’m not disabled, or that I’m capable of sustaining that degree of energy forty-hours a week. It means that, as a disabled person, I understand better than most that I have a limited amount of time on this planet, and that I’d better pack as much happiness and meaning into it as possible.

The True Cost Of Being Happy When You’re Disabled

The judge didn’t decide my case that day. In fact, it took six more months, and two additional hearings before he made a ruling. But ultimately, I was lucky: the judge decided the occasional performance did not negate my disability. I was granted SSDI.

Unfortunately, this does not mean my disability check is secure. In a 2018 budget request, the Social Security Administration proposed the ability to use Facebook and other social media platforms to monitor those applying for or receiving disability benefits. The claim is that this would allow SSA to better screen applicants, as well as investigate potentially fraudulent cases of people who are receiving disability benefits but are not actually disabled. While nothing has been approved yet, the current administration supports this proposal. A final ruling is expected in 2020.

If this is approved it could mean that those pictures I post on Facebook and Instagram, the ones taken on my ‘good days’ or when I’ve managed to muster up enough energy to go out and do something fun in the world, could be used as evidence that I’m not truly disabled. The posts I make could jeopardize my benefits. I will have to hide any joy I experience in my life, to ensure politicians and bureaucrats without any bodily ailments that I am joyless enough to eke out a meager existence.

I am going to pack as much joy into this life as possible. And no one has the right to take that from me.

But as my disabled friend Andrew Montgomery points out: “For the most part, no one outside your own bubble sees the true price disabled people pay for these moments of happiness: all the extra costs, and planning, and arrangements, and anxiety, and pain, and fear.” They especially don’t see the days of recovery that might follow a disabled person allowing themselves even one little thing that the able-bodied take for granted.

These aren’t the things posted on social media. As humans, we don’t post pictures of ourselves in pain. We post pictures of our happiest moments, so we can remember them later.

Which is why fun is so important to disabled people like me. It sustains us through our rougher times, gives us hope. So even if I can’t work 40 hours a week, I’m going to keep performing, keep camping, keep going out to eat, keep traveling as much as I can. I am going to pack as much joy into this life as possible. And no one has the right to take that from me.

Cancer Chronic Illness

Why The ‘Saw’ Films Are Relatable To Anyone Who Is Chronically Ill

The series' titular serial killer might be a monster, but part of what turned him into one was our broken, unfair healthcare system.

The Saw movies are regularly classified as torture porn, on account of the extremely graphic deaths that occur throughout the franchise. But it’s actually rare to find a series of films so committed to exploring healthcare, a life-changing diagnosis, and what living a meaningful life really means when you’re faced with your own mortality. They’re not everyone’s cup of tea, but for those of us who know the real torture of trying to navigate the modern healthcare system while chronically ill, the Saw series of films can, in their own way, be a guilty tonic.

In the Saw series, a murderer going by the name of Jigsaw (Tobin Bell) places people in elaborate traps, forcing them to fight for their lives. As the authorities try to track the enigmatic killer down, his schemes only get more sophisticated. Jigsaw’s catchphrase, revealed in Saw II, sums up his core motivation for killing—“Those who don’t appreciate life do not deserve life.” But what strikes me about Jigsaw is that he’s not “just” a monster: he’s also chronically ill himself, and outraged by issues such as the unfairness and impenetrability of our health insurance system, as well as larger issues around healthcare equality.

For those of us who know the real torture of trying to navigate the modern healthcare system while chronically ill, the Saw series of films can, in their own way, be a guilty tonic.

Over the course of seven Saw movies, and the recently rebooted Jigsaw, we learn about the man behind the mask—John Kramer—and what drives him to play quite so many games, along with his handmade companion, Billy the Puppet. The reason, it turns out, is his own diagnosis with colon cancer, which metastasizes into an inoperable frontal lobe tumor. But instead of using cancer as a cheap plot point the way that many movies do, the Saw films use the condition as their main character’s greatest motivator. Kramer realizes that he’s been given a second chance at life, and is intent on making others appreciate what they have, too—albeit, using clearly deranged methods.

I don’t have cancer, and can’t speak to what that’s like (I have my own smörgåsbord of health issues), but my mom passed away from metastatic bowel cancer three years ago. Mom wanted as much life as she could possibly get, and in this one small way, John Kramer reminds me of her.  

A photo of the killer from the Saw movies, John Kramer, as well as his creepy puppet, Billy.
John Kramer, aka ‘Jigsaw’, and his creepy puppet, Billy.

One of Jigsaw’s most relatable moments happens in 2005’s Saw II, when Kramer explains the moment he realized his mortality was achingly close: “Can you imagine what it feels like for someone to sit you down and tell you that you’re dying? The gravity of that. The clock’s ticking for you. In a split second, your world’s cracked open. You look at things differently. You smell things differently. You savor everything be it a glass of water or a walk in the park. But most people have the luxury of not knowing when that clock’s going to go off. And the irony of it is that keeps them from really living their life.”

While Jigsaw takes his own epiphany too literally, leading him to place victims in murderous situations, any diagnosis can be a life-altering shift.

While Jigsaw takes his own epiphany too literally, leading him to place victims in murderous situations, any diagnosis can be a life-altering shift. For instance, I made several major changes in my personal life following a diagnosis with MS in 2013, such as moving across the country and leaving a long-term relationship behind. Any illness or condition has the power to bring things into sharp focus, or blur them beyond all recognition.

As the series progresses, it’s eventually revealed that Kramer’s own diagnosis didn’t come as quickly as it could have. In 2017’s Jigsaw, Kramer tragically reveals: “Were it not for a careless mistake by a resident of the hospital I was in, my cancer could have been diagnosed a lot sooner. It was simply the wrong name on an X-ray.” This delay undoubtedly influenced the anger the antagonist felt at not receiving the appropriate care he required. Kramer laments in 2006’s Saw III, all patients “need a competent physician who looks them in the eye and treats them like human beings,” something he seems to have lacked. But rather than simply pursuing revenge, Kramer becomes a patient advocate of sorts, fighting on behalf of other chronically and terminally ill individuals (when he’s not busy setting traps, that is).

This is no more evident that in 2009’s Saw VI, which puts access to healthcare and insurance under a UV light. When seeking an experimental treatment for his cancer, Kramer is told by his insurance company, Umbrella Health, that the procedure will not be covered, mainly because it isn’t financially viable due to his age and prognosis. The algorithm used by the company makes a plethora of patients disqualified from treatments which could improve their conditions and potentially save their lives. This major injustice doesn’t sit well with Kramer.

A woman in a rusty torture device.
In the Saw movies, Jigsaw puts his victims in deadly contraptions and make them make impossible choices in order to live. It’s a metaphor for the chronically ill experience.

The desire to explore a universal topic, which continues to impact upon chronically and terminally ill individuals on a daily basis even now, shifted the focus of the horror franchise entirely. Rather than simply documenting the conquests of a deranged killer (which the movies still do, of course), Saw VI asked why all humans aren’t treated equally when it comes to the level of care they receive and the treatment they’re able to access. Money is at fault, too, with financial inequality viewed every bit as damning as an insurance company’s impersonal, lottery-like, algorithm.

Jigsaw’s solutions aren’t for the faint of heart, but his unwavering belief that life should be savored melts even the stone in my chest.

Kramer, of course, uses his insurance denial as another motivator, and a chance to examine the unjust areas of society he’s intent on adjusting. He exclaims, “Once you see death up close, then you know what the value of life is,” although his words aren’t enough to change the insurance company’s decision. Kramer sets traps for every Umbrella Health agent responsible for his denial from beyond the grave, by way of his ever-growing list of protégés, but healthcare inequality is insurmountable even for a prolific serial killer to tackle, sadly.

For all these reasons and more, I’m relieved that the Jigsaw Killer will reportedly be returning for a ninth instalment in the franchise. Gore that burns into your eye sockets, and blood-curdling traps aren’t for everyone. My mom hated gore, but she’d have loved John Kramer’s bad attitude and penchant for justice. Jigsaw’s solutions aren’t for the faint of heart, but his unwavering belief that life should be savored melts even the stone in my chest.

Chronic Illness

“Yes, And…”: The Critical Improv Skill That Can Help You Live Life With Chronic Illness To The Fullest

In improv, you're trained to keep building the story, no matter what. I found out firsthand the same skill is important in chronic illness.

Imagine this scene: A woman lies in bed, waking up, and looks over to her calendar to see what her day holds. “Wow,” she sleepily says, “I’ve got a lot to get done today.” Just as she’s about to get up, another person walks in. “Hold it,” he says. “I’m Pain, and you’re not going anywhere today.” The woman looks at Pain, frustration written across her face…

The woman in the above scene is faced with a dilemma. Her plans have been changed with the introduction of Pain, and she needs to decide how to react. Does she ignore Pain and push past him? Does she pretend he never entered the room? Or, conversely, does she follow one of the main rules of improv, and instead of resisting this plot twist, accept it with a “yes, and…?”

“Yes, And…” in Improv and Beyond

The concept of “yes, and…” in improv is a very important one. It says that you’re agreeing to what is happening in the scene. In addition, with the ‘and…’ you’re contributing to moving the scene forward further. Even if you originally imagined the scene going in one direction, if your partner throws out a completely new idea, you go with it. Instead of digging in your heals and resisting the change, you accept it and add on to the new storyline.

Instead of digging in your heals and resisting the change, you accept it and add on to the new storyline.

Over a decade ago I took a week-long improv class where I learned this concept, creating silly scenes with other novice actors. While I’ve forgotten much of what I learned over that week, the idea of “yes, and…” stuck with me. Little did I know when taking the class, however, that this foundational rule of improv would become so vital years later in how I view and navigate my life with chronic illness.

Saying Yes to the Changes

One of the hardest things when dealing with chronic illness can be accepting the changes to your life. When I first became ill, I very much resisted the changes. This was not the way I had expected my life to go! This was not the storyline I’d mapped out in my mind, and I didn’t want to have to change course. My chronic illness was introducing major plot twists into my life that stymied my plans and goals.

But just like saying ‘no’ during improv can completely kill the scene, saying ‘no’ to the changes thrown our way during chronic illness can halt the progress of our lives. When I fought against the changes instead of accepting them, I was unable to move forward. I became depressed and couldn’t see a future, focusing instead on all the things that wouldn’t happen due to my illness. I was stuck, and my life story wasn’t unfolding.

During a conversation with my therapist about radical acceptance I suddenly recalled my improv class from years prior and the concept of “yes, and…” What if I thought of my chronic illness as my scene partner who I had to work with to create this storyline?

Just like saying ‘no’ during improv can completely kill the scene, saying ‘no’ to the changes thrown our way during chronic illness can halt the progress of our lives.

I realized that my scene partner, my chronic illness, was introducing changes into my life whether I wanted to or not. Just like in improv, we may not always like what our partner introduces into a scene, but in order to keep the scene moving, saying ‘yes’ to it is imperative.

I had the choice to either resist these changes like I had been doing, or say ‘yes’ to them. I chose the latter and began, with every curveball my chronic illness introduced, to accept my new reality and the new direction of my story.

Saying And… to the Changes

The thing is, the concept of “yes, and…” in improv isn’t just about accepting; it also involves the ‘and’ where you add on to the ideas and continue to contribute to the scene. While saying ‘yes’ allows the scene to continue, without the ‘and…’ it doesn’t move the storyline forward any.

I had begun to say ‘yes’ to my evolving story and how chronic illness changed my life. I could no longer work the job I once did, a lot of my hobbies were no longer feasible given my limitations, and I couldn’t parent the way I used to. I’d gotten to where I could accept these things. But just accepting them was not enough. If I wanted my storyline to continue, I had to contribute to it. I had to say “yes, and…”

One of my favorite things about improv is that there are so many options for directions to take a scene. When a plot twist is introduced, you get to decide where to go with that. Every time new changes are introduced, it provides new opportunities for you to get creative.

If I wanted my storyline to continue, I had to contribute to it. I had to say “yes, and…”

The same is true with living with chronic illness. And while it doesn’t feel great to be having all these changes thrown my way, each one gives me the chance to see how I want my story to go from there.

Now, when chronic illness tells me I won’t be working full-time, I can reply with “Yes, and I’ll write more often!” When it tells me I’m going to need a cane, I say, “Yes, and I’m going to decorate it and go dance with it!” And on those days Pain walks into my bedroom shouting, “You’re not going anywhere today!” I nod: “Yes. My other plans can wait; today is the perfect day to order food and have a movie marathon.”

Not only does “yes, and…” help me to keep on with my life, but it also helps me to once again feel like an active participant in it. When I first became chronically ill and was fighting against the changes, I felt defeated and tired. When I began accepting the change, I felt better, but still passive and resigned. Now, as I practice saying “yes, and” to the plot twists created by chronic illness, I feel actively engaged and optimistic about the story I am creating with this life.

Chronic Illness

When Embarrassment Can Kill

For years, shame and embarrassment stopped me from talking about my symptoms with doctors. My silence could have killed me.

In my family, we had a mantra: if you can walk, you’re fine. Which is why from the ages of 18 to 27 I avoided the doctor’s office at all costs.

I wasn’t scared of doctors, just stubborn and easily embarrassed. What teenager wouldn’t be embarrassed to go into someone’s office and tell them about my finicky digestion and ongoing constipation issues, let alone the occasional bloody stool? Everyone has those, right?

Then, in 2018, I found out firsthand how embarrassing avoiding the doctor could get.

It was August. I had just gotten back from visiting my parents in Illinois and I thought that I had caught a stomach bug. On the drive back to Massachusetts, I stopped to go to the bathroom 11 times, and what I saw in the toilet after was enough to make me sick, even if my stomach wasn’t already cramping something awful. Still, I decided it probably wasn’t anything to worry about, and went to work.

It was Wednesday and I was in trouble. I opened the shop that I managed, but had to lock the door every thirty minutes to run to the back and go to the bathroom. On Thursday I didn’t even bother locking the door and on Friday I called in sick, something I almost never do. That last day I didn’t even make it to the toilet.

I spent the next week floating between the couch and the bathroom. I couldn’t go to work or school. Before I knew it, a month had gone by. I felt myself wasting away.

I couldn’t go to work or school. Before I knew it, a month had gone by.

The nurse practitioner that met with me was absolutely lovely. With perfect hair and beautifully manicured hair, Rachel  invited confidence… but as I sat in front of her, reciting my symptoms, I stared a hole in the floor, I was so mortified. When I referenced my bowel movements, I used weird hand gestures; the whole interview, I kept my head ducked in a fit of shame. Rachel prescribed a high dose of Prednisone and booked me for every blood test she could think of—every infectious disease included. I was just getting up the courage to look her in the eye when Rachel told me I’d have to poop in a cup. I felt myself start to sink into the floor.

My official diagnosis after the blood work, the stool samples, and the resulting colonoscopy was severe Ulcerative Colitis, severe Gastritis and Barrett’s Esophagus. All of my doctors told me similar stories: I was very lucky. Unlike most people that suffer from Ulcerative Colitis and Irritable Bowel Disease, I had somehow avoided hospitalization altogether. I didn’t have to have major surgery. I didn’t end up with an ostomy bag. I didn’t end up with permanent damage from all of the vitamin deficiency I had put my body through for years.  I was very lucky indeed. My experience didn’t match the odds.

My gastro sent me home with a file from the colonoscopy. When I opened it to check it out I was met with a few shocking photos from inside my body. My gut looked like something from a horror movie. Pus dripped from my fiery red intestinal walls. Blood seeped from pockets of infection. I flipped the folder shut quickly and tossed in into the bottom drawer of my desk.

My embarrassment almost landed me in the morgue.

The only good thing that came out of my experience was the knowledge I gained. I am not just a statistic. Ulcerative Colitis is a chronic disease that causes ulceration of the inner lining of the colon and rectum.  It is a type of Irritable Bowel Disease (IBD), like Crohn’s Disease. There is no cure, but the disease can go into remission. At times it can be debilitating while at other times it feels like nothing at all. It is a disease that comes in mild, moderate and severe but all stages can be horrible. In my case, I was gifted with bleeding intestines, uncontrollable diarrhea and severe abdominal pain. I ran a consistent fever, had night sweats and was extremely anemic. Later I would learn that I was B12 deficient as well—so much so that my doctors aren’t sure how I ended up without permanent neurological damage.

According the Center for Disease Control almost 3 million adults in the United States have been diagnosed with some form of IBD. Most people are diagnosed in their 20s and 30s. I was diagnosed when I was 26. Embarrassment shouldn’t be a factor as to whether or not you see a doctor for a medical issue. You can still be a strong, independent woman and seek help. It doesn’t lessen you as a human, even if you have to poop in a cup.

Cancer Chronic Illness

Chronic Illness When You’re Twins

Through cancer and celiac disease, these twins helped each other through their diagnoses.

Growing up, Robin Melamed and Tara Liebnick, now 45, were typical twins. They shared the same group of friends and more often than not, they completed each other’s sentences. In college, they joined the same sorority. Then, in their thirties and within a matter of months, the twins got the news—they both had cancer.

Facing a double mastectomy, they mulled over a procedure to rebuild their breasts. Melamed, who panics when she reads about health-related topics online, depended on Liebnick’s research to decide. During Liebnick’s chemo, Melamed flew to Dallas to help out and cheered on her nephew at his soccer games. Through hysterectomies, chemotherapy and lengthy hospital stays, the twins found solace in their relationship that’s like no other.

They’re not alone. Many twins with chronic illness have found that navigating their condition together has both grounded them and lifted them up.

Robin Melamed and Tara Liebnick are twins who navigated cancer diagnoses at the same time.

Cancer When You’re Twins

“What’s made it easier is having each other,” said Melamed, who lives in Houston. “It’s helpful we’re so much alike. We know how to be there for each other. We know what to say and what not to say. Going through this together has strengthened our relationship.”

Liebnick was the first to find out. She felt a lump in her breast. Cancer, her doctor said. Then, she tested positive for the BRCA1 gene mutation, which put her at a high risk for having both breast and ovarian cancer. Melamed was browsing the racks at Nordstrom’s in Houston when their dad called and broke the news about her sister’s diagnosis. She was devastated.

“It was a very scary time,” Melamed said. She also knew that if Tara had tested positive for the mutation, she would too. “I thought, fine, I’ll have preventative surgeries. At the time, it wasn’t on my mind I’d be dealing with cancer first-hand.” Melamed, who didn’t have any symptoms, still decided to have both breasts and her uterus removed. That’s when they discovered she too had cancer, in her abdomen.

“I don’t know how I would have gotten through [cancer] without her…”

As the months progressed, the sisters spoke multiple times a day and late into the night after their kids went to bed, on the phone, by text and over email. When Melamed had surgery to remove the cancer in her abdomen, then got an infection, Liebnick flew to Houston. She slept on a pull-out couch in Melamed’s hospital room for nine nights.

As Melamed lay there, moving in and out of consciousness, Liebnick knew how to bring a smile to her twin’s face. She played the Hamilton soundtrack for her on her phone and wheeled Melamed outside to get fresh air.

“I don’t know how I would have gotten through that without her,” Melamed said. When Melamed finally came home, she recovered in a rented recliner chair. The suggestion had come from her sister, who’d rented one after chemo.

Fraternal twins Jamie Serrano and Zach Friedlander were both diagnosed with celiac disease around the same time. 

Celiac When You’re Fraternal

Fraternal twins Jamie Serrano and Zach Friedlander, 29, have supported each other through chronic illness as well. The twins always had diverging interests. Serrano is more of a book worm; Friedlander was the physical twin. Having celiac disease has given them something to bond over.

Serrano was the first to get diagnosed. She was 16, volunteering in rural Mexico for the summer and wasn’t feeling quite right. Her stomach was off, but she assumed she had a virus or traveler’s diarrhea. She stuck to bland foods like flour tortillas and made do. Back in the U.S., doctors ran a blood test. It was positive for celiac. “An endoscopy showed my intestines were demolished,” she said.

Serrano changed her diet, cut out gluten and focused on fruits, vegetables and proteins. She learned to navigate eating out—which restaurants were safe, what questions to ask to make sure she didn’t get “glutened.” She studied food labels and learned where hidden gluten can lurk.

Friedlander got tested at the time too, even though he had no symptoms. But, he was negative for celiac. So, he forged on, enjoying beers and burgers during his college years and indulging during regular visits to Taco Bell. Then, a few years ago he noticed he was getting light-headed and dizzy. He was anemic. It was celiac.

“It’s given us something to bond over.”

Soon after, Serrano went in for a regular endoscopy to check her intestines. Her brother set one up for the same day. Afterwards it was clear; they both had celiac. As nurses pushed them into the waiting room in wheelchairs, Friedlander told Serrano he wanted to have one last gluten-filled hurrah. Pizza, burgers, beer, cookies and cake. Serrano set him straight.

“She said ‘no you can’t do that,’” Friedlander said. “She told me stories about people who don’t follow the diet, what can happen to them.”

From then on, Serrano has served as her brother’s guide, facilitating his way into the world of gluten-free eating. After his diagnosis, Friedlander regularly snapped photos of food labels and texted them to his sister to screen for gluten. When he moved back home to Chicago from Indiana, she showed him the best gluten-free friendly restaurants, and at grocery stores, pointed out the tastiest gluten-free cookies and crackers.

“It’s given us something to bond over,” Serrano says. “I’ve helped him navigate everything, and we enjoy sharing gluten free food together.”

The twins talk more today than they did in the past, Friedlander said. “It’s been a big help having her,” he said, “and I know she’s enjoyed helping me and having someone who can relate to her. We talk more now. We’re more open and we’re closer because of it.”