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We Need to Stop Shaming Others for Their Treatment Choices

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As someone living with reflex sympathetic dystrophy (RSD), also knowns as complex regional pain syndrome (CRPS), being part of a supportive network of people who struggle with the same diagnosis has been a critical component of how I manage living with this disease.

Online support groups, in-person meet-ups, group chats and message boards are some of the most common ways we connect with others around the world to learn what treatment options are available to us.

While generally these mediums are supportive, safe spaces, I’ve noticed a trend over the last few years that has become increasingly bothersome to me and many others: treatment shaming.

 

RSD/CRPS is considered a rare disease, which translates into limited funding for research and treatment, minimal to no education for the medical community and a general lack of awareness. Because of this, the rate at which new treatments are being looked at and made available is moving at less than a snail’s pace.

Understandably, whenever a new treatment actually does becomes available, a lot of buzz and hope is created.

Over the last 13 years since my diagnosis, I’ve seen many treatment options briefly rise in popularity, stirring up much excitement in the community, often elevated to the status of latest fad. And, like most of them, their moment in the spotlight fades, and we are simply left with yet another mediocre option.

With any treatment there are usually success stories, and oftentimes those eager to share their positive experience align with doctors and other people in the community who adopt a singular point of view on how the disease should be treated and managed based on their personal experience.

Some then take this a step further and attempt to persuade others that their treatment regimen or doctor is not properly managing them because they have chosen a different path. Bullying tactics and fear often accompany this, causing some community members not to feel safe sharing their experiences with treatment. This is the definition of treatment shaming.

All of this has led to hurt feelings, misinformation and exclusionary behavior towards those who chose other treatment routes and creates division among the community.

This issue is not limited to the RSD/CRPS community. In fact, many rare disease communities also facing the same hurdles for proper research and treatment for their specific disease also experience this.

It is never OK to shame or judge someone based on their chosen treatment path.

As people with a chronic illness, we already face so much criticism and misunderstanding from others who don’t understand our experience. It’s very difficult when that begins to occur within our network of support. Shaming or hurling an unsolicited opinions towards others based on their treatment choices can be hurtful, discouraging and even dangerous.

Treating RSD/CRPS is a journey – one that is both personal and unique to each individual. There is no right or wrong way to manage this very difficult disease.

We are all in this together. Let’s lift each other up, and hold space for our fellow warriors without shame or judgement.

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Thinkstock photo via ARTQU.

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I'm Allergic to Touch, and No One Believes Me

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“I don’t believe in that.”

It was the first time I heard it, and it threw me. I sat in the gastroenterologist’s office, hands in my lap, as he explained to me that aside from a little inflammation, there was nothing physically wrong with my intestines.

I had just suggested, in my limited, 19-year-old medical vocabulary, that perhaps I had something like SIBO (small intestinal bacterial overgrowth). I knew full well I ate a relatively healthy diet, that the occasional pizza wasn’t the reason I was getting sick after every meal. But he brushed it off. Maybe, he speculated, I was lactose intolerant.

I left the office, passing a waiting area and a fountain. I vomited into my mouth quietly, barely noticing because I had become so accustomed to it. I ran through the appointment in my mind. Nothing wrong. Eat healthier. Blood test results normal. Lactose intolerant. I don’t believe in that. I don’t believe in that.

 

It was six months until I took matters in my own hands. By process of elimination, I began removing common allergens from my diet, and reintroducing them one by one.

I was not lactose intolerant. I was having extreme, multi-system reactions to almost every staple in my diet. Soy, corn, wheat and yes, dairy. And I wasn’t just reacting to eating those foods, I was reacting to touching them  –  more specifically, to touching other people who had minuscule amounts of food on their hands.

I went to an allergist next. I laid on my stomach during the skin test, burping and throwing up into my mouth because tiny amounts of dairy, soy and wheat had been pricked into my back. But while the allergist and the nurse both showed great concern for how visibly ill I was becoming, the test results were negative. I had “true allergies” to grass and dust mites and pollen  –  but not to any of the things I’d identified as making me so ill.

I expressed my frustration to the allergist, explaining I was reacting to tiny amounts of specific foods, regardless of the skin test results. “I can’t help you with that,” he said. “You should see a gastroenterologist.”

It’s been four years since I started to get sick. Three years since I discovered I was reacting to foods. Two years since I shook hands with someone holding a coffee, and realized 10 minutes later I had become allergic to human touch.

“I can’t shake hands because of my chronic illness,” I tell people. “It’s nice to meet you, though.” There hasn’t been a single time the other person hasn’t been thrown. When people ask me to explain, I see the same incredulity in their eyes as I’ve seen in the eyes of so many medical professionals. I don’t believe in that.

At first, even my partner wondered if it might be psychological. Maybe I was having anxiety about contacting or ingesting the foods, and that was manifesting in physical symptoms. We were in a long distance relationship, so eating together wasn’t a regular occurrence. But after the first time they watched me fall ill because they had eaten dairy and then kissed me, they didn’t wonder anymore. They didn’t have to; they were close enough to see it.

I’ve never had a choice but to believe in it. My body is living proof. A speck of my housemate’s spit hit my face as she laughed, and I spent the rest of the day in bed, sick to my stomach, brain fog so thick I could barely form sentences. A radiologist touched my face rather than simply asking me to move my head to the right, and my partner had to steer me home by the arm because I was so dizzy and confused.

While those close to me believe me and support me — wash their hands with corn-free soap when they come to my house, hug me over my clothes, don’t complain that we can’t go out for lunch — outside of my inner circle, particularly in medical settings, I have been met overwhelmingly with skepticism. When modern medicine does not have a name for your experience, most people assume the problem is you, not the lack of research into rare and chronic illness.

It’s not just an issue because I’m sick and there’s no definite reason why, no treatment, no solution. It’s an issue because having my experience invalidated in medical settings legitimizes its invalidation in all settings. It’s an issue because when people disbelieve me, they often go on to do things which I’ve just told them will make me sick. A family member once gave me vegetables covered in butter and told me they were plain. They assumed it was all in my head  –  that if I didn’t know the butter was there, I wouldn’t get sick from it.

How many days should I have to spend unwell and in pain to prove to the world I’m not making it up? What if I shake someone’s hand before my next gastroenterologist appointment, and vomit onto the floor instead of choking it down? Would I be believed then?

Or would I just be told I’m lactose intolerant?

This post originally appeared on Medium.

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To the Doctor I Trusted Who Told Me My Illness Was 'All in My Head'

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Starting at the beginning of this year, my fiancee and I moved into an apartment about an hour away from where I was going to be attending school. Now by this point in my life, I had been sick on and off for six years and had been through a gastroenterologist, multiple primary care doctors and a neurologist, so in late spring of 2016 when I found a gastro doctor that actually listened to me and treated me with respect, I was shocked. She listened when I told her I wasn’t feeling well and when the tests she did always came back saying I was super healthy, she would believe me when I said I wasn’t. She was nice to me. She treated me kindly and I really appreciated that.

One weekend when Danielle (the lovely lady who for some reason wants to spend the rest of her life with me) was on a business trip, I started feeling a little ill. Now please believe me when I say that compared to what my body usually goes through on any given day, this sinus infection was like a vacation. Fever? No problem! Can’t breathe out of my nose? Bring it here! Just as long as it’s not nausea. It was a welcomed break from my usual feeling crappy. And I always welcome new ways to feel crappy! Come join the family!

I went to urgent care for my sinus infection and they gave me an antibiotic, and I thought that was the end of it. The next afternoon I became so nauseous I couldn’t move. I didn’t understand what was going on. My nausea pill wasn’t working like it usually did and I was just miserable. I figured I hadn’t eaten enough and went to sleep. The next day at school, I had to sit out of classes the entire day (acting school, very active) because I still felt nauseous. I knew I had eaten enough that morning and in tears called my mom. At this point I didn’t have a car and was stuck in DC knowing I couldn’t handle public transportation.

I got an uber back to the apartment and remember telling Danielle I didn’t understand why the medicine was making me sick, but that I wasn’t going to take it anymore. Just when I thought I had found a solution the universe gave me another problem.

I stopped being able to eat. Not because I was nauseous – I wasn’t, and was actually starving. I was dying to eat something but my stomach wouldn’t let me. I started feeling like all the food I ate wouldn’t digest properly.

I went to my primary care doctor and her advice was, “If you’re dizzy because you’re not eating anything, maybe you should eat something.” Like I hadn’t thought of that. This was on Friday. The previous Monday I was diagnosed with my sinus infection. I had already lost eight pounds.

Since that advice from her didn’t work, the following day I ended up in the emergency room. By now I had lost 10 pounds and was starting to show signs of dehydration. The doctor in the ER told me he could do a CT scan of my abdomen to see if there was anything blocking my GI tract, but that he didn’t feel like it. I left incredibly discouraged and felt like no one except my fiancee and mother could see how I was struggling.

A few more days past and I started getting incredibly weak. I was shaking all the time because my body was so cold and it took a lot of energy to show up. But once I was there, I didn’t have the energy to do what was required of me.

On Wednesday I had had enough. I called my gastro doctor and spoke to her assisting nurse. She told me to go to the ER that my doctor was affiliated with because she was the gastro doctor on call and to tell the regular ER doctor what had been going on. I finally thought I saw the light at the end of the tunnel. I was actually excited about the opportunity of getting an endoscopy done to figure out what was going on. That evening my fiancee and I made the trip to the ER. Now it had been nine days since I was diagnosed with a sinus infection and I had lost 20 pounds. I cried (well, tried to, I was very dehydrated so it came out as more of a whimper) when they weighed me. I felt awful. How could my body lose so much weight so quickly? Why was my body doing this? I thought going to the ER would finally shed some light on what was going on.

I was wrong. The doctor at the ER basically verbally assaulted me. She started questioning everything I said and when I told her my doctor’s assisting nurse told me to come and talk to the gastro on call, she laughed at me. She said she wasn’t going to call my doctor. My sugar levels were low and my oxygen levels were so low they spoke about putting me on a respirator. There was even talk about a feeding tube and with all of that she still wouldn’t call the gastro doctor. She told me she spoke to my doctor and that her nurse never told me to come in. At this point I was actually in tears. I don’t think I said anything else to that doctor the entire six hours we were in there. I felt incredibly violated and mocked and I didn’t understand why I was the target of this doctor’s anger or frustration. They discharged me and said I should call my doctor tomorrow.

 

I called my doctor on the car ride home (4:00 a.m.) and when they called back they let me schedule an endoscopy for the same day. I was still feeling a little deflated but was glad I would soon know what was wrong.

Nothing. The endoscopy showed nothing. I couldn’t believe it when my doctor told me. I remember looking at the scale in the ER the night before, seeing that in just nine days I had lost 20 pounds and asking her what could possibly be wrong with me.

She then told me it was “all in my head.” She told me to see a therapist. She told me I had an eating disorder. I was mad. I was exhausted and I was dumbfounded.

So, to the doctor who told me it was “all in my head:”

I hope you never again have a patient who is counting on you as their last hope. I hope you never have to know what it feels like to have something be physically wrong that you just can’t figure out. I’m not angry anymore. I understand it takes time out of your day to see someone who looks very healthy. Maybe it is all in my head, but I don’t accept that as a final answer. I now understand that what’s going on with my body is not normal. I know you should have tried harder to figure it out. I know I wasn’t wrong in looking to you for help.

When her assistant called to schedule a follow-up appointment I said no.

And, to the patient going through hell,

Keep fighting. I live for the moments when my illness is 10 feet away from me and I have the energy to keep running. I find joy in the times I can come up for a second of air. You’re going to go through doctors who don’t believe you. You might even go through friends and family who don’t believe you. But keep fighting. Hold your head up high and I promise when you can come up for air, it’ll feel good to say “I got through that.”

This post originally appeared on Here’s a Spoon.

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Thinkstock photo via monkeybusinessimages.

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Why I'm Sharing the Burden of My Chronic Illnesses With the World

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I don’t like feeling vulnerable and I’m not good at opening up. I firmly believe my problems are my own responsibility. But I have learned this past year there are some things that are too big to handle by myself. So, world, I am sharing my burden with you. My name is Sarah, and I am chronically ill.

I have three chronic conditions – Hashimoto’s hypothyroiditis (an autoimmune disease that attacks and destroys the thyroid), gastroparesis (delayed emptying of the stomach) and dysautonomia (a condition where the parasympathetic and sympathetic nervous systems don’t know how to communicate properly). All three conditions are incurable and all three have limited treatment options. All three conditions have had drastic impacts on my life.

Because of Hashimoto’s, my energy levels are almost nil. I need to nap in order to make it through the day. Gastroparesis caused me to lose 40 percent of my body weight in seven months…because I could not keep anything down, I was vomiting upwards of 20 times a day. It got to the point where I was scheduled for a surgery to place a feeding tube directly into my intestines. Thankfully, we found a medication that works, but has caused a tremendous amount of weight gain in a short period of time. Dysautonomia means almost passing out every time I get up and sometimes needing to use a wheelchair to get around. I have had to delay my life by a year just to try and manage these conditions.

 

To my friends, I am sorry. I pushed you away instead of letting you in. I was so afraid you would leave me, so I left first. Most of you don’t know how sick I got and that’s on me. I hope we can eventually get back to the friendship we once shared.

To my family, thank you for pushing back, for letting me cry on your shoulder, for supporting me, for celebrating my victories and catching me when I fell. I know how much you worried and how much you care. I literally wouldn’t be here if it wasn’t for you.

I was diagnosed with three chronic conditions before the age of 23. While this isn’t fair, it’s life. And what I’ve learned so far on my journey is that life is much more enjoyable when shared – even the difficult parts. So, world, thank you for letting me share. A burden becomes less of a burden when shouldered by more than one.

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Thinkstock photo via blyjak.

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Why I Dread the 'Good' Days With Chronic Illness

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Since becoming ill in 2015, there have been “good” days.

Make no mistake – not a day has gone by since that fateful August that I’ve had even a significant fraction of the health and abilities I had prior to FQAD (fluoroquinolone-associated disability) – but there have been days when the nausea has subsided, and I’ve been able to ingest my favorite foods.

There have been days when my heart rate and blood pressure remained blissfully within the bounds of “normal” and I didn’t have to lie down or remain inactive for fear I would faint.

There have been days when the pain’s been more manageable.

 

Days when the vision’s less blurry, the tinnitus less pronounced, the dry sicca syndrome less…dry.

I hate those days.

Don’t get me wrong: it’s not that I’m not grateful for any measure of relief. I am.

It’s just that, every time I experience a “good” day, that day brings with it physical and psychological consequences:

On a good day, I am likely to “overdo it.”

A low-symptom day means that perhaps I can tend the garden.

Or grocery shop for myself.

Or spend the afternoon with a friend.

A low-symptom day might allow for a walk, a short car trip, going to see a show.

But inevitably this “overactivity” that would’ve been but a drop in the bucket for healthy me, now pretty much guarantees that the next day, or the next few days, or even the next week will be one of punishment and pain because I dared use my body on the one “good” day.

Likewise, psychologically, a “good” day brings with it a false hope: if the nausea is gone today, perhaps it will be gone tomorrow. And forever! Perhaps today is the first day of the miraculous healing I’ve been praying for since the day my body first told me something was wrong.

Low pain day? Perhaps this is it! That rainbow after the flood! The promise that my body – a healing machine – has finally figured the complex code necessary to get back to that pre-FQAD me.

“It’s here!,” I inevitably tell myself. “Finally! Relief from this nightmare! Today, tending the garden. Tomorrow – working and traveling and conquering the world!”

So, imagine my heartbreak – the soul-crushing despair – that comes when the symptoms return and I am once again at square one (or square minus 101).

It’s like becoming sick all over again.

It’s the loss of my healthy self all over again.

It’s the cycle of grief all over again.

It’s more than just a setback; it’s a continuous re-injuring.

Psychological torture.

I hate the “good” days.

And yet, I continue to live for them.

Because it’s the hope these days bring that keeps me going.

Man, I hate the “good” days.

But I sure hope today is one.

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Thinkstock photo via DinoStores.

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When the Endpoint of My Illness Continues to Move Away From Me

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As a small child, I had a simplistic view of what it meant to “grow up.” It wasn’t necessarily that I would have the highest paying job, or own a herd of dogs (though that was definitely a priority). The thing I always wished for was that I could “grow out” of my health problems. That miraculously when I turned 18, all the things that had affected me would suddenly disappear or become easier to overcome. I wished for the ease everyone else seemed to have, of going about life with every opportunity available to them, or the luxury of being young and feeling invincible.

I’ve had everything from minor health woes to major life-threatening conditions. I’ve lived through the whole spectrum. At the grand old age of 23, I have to admit I’m pretty tired of it. I like to think I had two good years of being grown up like I hoped: from when I graduated school at 17, to when I fell suddenly and critically ill at 19. Those two years were not perfect. I still struggled with many things in my life, but they were briefly free of most scans and tests and endless doctors appointments. I look back in amazement at only having two regular medications rather than the dozen I now tend to cart around with me.

I assumed that as I progressed through my degree, I would become more independent and have more experiences. In reality I was suddenly and cruelly restricted from interacting in the world, of accomplishing my longed for goals. It was such a sudden shift, from one day working seven days a week between university, a part-time job and prestigious internship to being bed-bound, unable to get to the bathroom, so ill I stopped knowing who I was or who the people around me were. It all felt a vast cry from the lives of my peers and beloved friends. I never begrudged them their achievements, but it felt bittersweet when my own felt unattainable.

It felt like the endpoint of this hell kept moving. First it was six months, then a year, then two, then five. Now it’s anyone’s guess. Recovery didn’t mean what I thought it would. Rather than steady progression back to peak physical and mental fitness, every step brought new complications. Sometimes it feels like the medical burdens I carry are more than any one person should ever have to endure.

Rather than endlessly torment myself with passing dates and “failings,” I have decided to change the goal posts entirely. I have the rest of my life to recover; in fact, I may never be as healthy as I was for those two brief years. And that’s OK. As far as I know, there is no parallel universe version of me to show what my life would have been like had I not gotten ill. Even if I had not gotten encephalitis, I may still have gotten cancer. We’ll never know.

There might not necessarily be light at the end of the tunnel, but it turns out there’s still some bloody cool stuff happening in the tunnel itself. I don’t have to dream about the day I’m “better,” I can celebrate whatever steps I have made and how I live my life right now. Part of who I am now is shaped and informed by the experience of being so unwell; I would never have realized my own resilience. That’s not to say if someone had a magic pill I could take tomorrow and all my health worries would evaporate that I wouldn’t take it. There is still a large part of me that longs for normality and stability. But there’s nothing wrong with having a brain and a body that are a bit different. I don’t accept that I won’t be able to ever do the things I want, but I do accept that I will do them in a different way.

It turns out the tunnel has pretty cool people in it too. The people I have connected with in this big wide world of disability and disease have show me the variety and spice of life that can be achieved against all odds. That you can have every diagnosis under the sun and still have an identity outside your illness. I don’t have to be defined by what has happened to me, but it will always influence myself. I could be chronically ill the rest of my life or miraculously cured tomorrow. And for now, that’s OK.

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Thinkstock Image By: zaieiu

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