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


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


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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Why I Dread the 'Good' Days With Chronic Illness


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


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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When a Medical Resident Questioned How I Rated My Pain Level


I recently began seeking treatment at a teaching hospital which has its pros and cons. Some of the pros are that there are a lot of diagnoses and treatment being thrown out, giving the patient a better opportunity to get what they need. The cons, however, is that although you continue to see your doctor, you also see the residents that are there. At almost every appointment, you are seeing a different resident that has to learn your history in the few minutes before they walk into your door. Once they come in, they ask you the typical questions: How are you today? How are you feeling? Are you taking anything?

This particular resident asked me to rate my pain. When I did, he looked at me and commented, “That is really high. Are you sure that is what you would rate it?” I said yes and as he was walking out the door to converse with the doctor, he said, “Maybe your pain scale is different than ours. Because people in that much pain are usually not functioning.”

This comment made me mad originally, but after thinking about it, he is a resident – not my doctor. He doesn’t truly know my history and what I have gone through. This is the first and only time he has seen me so he has no way to compare that day with the past. He doesn’t know that I have been battling complex regional pain syndrome, fibromyalgia, and Lyme disease for the past six years. These last six years have truly taught me to power through the pain. Life does not just stop at the moment of a diagnosis, I must keep on going.

So yes, my pain can be higher and I can still function with it. Maybe my pain scale is different. But, if you ask anybody who really knows me, they know that I continue to push through high pain levels. And, my pain level of a five may be an eight to someone else. Nobody knows your history and what you are going through like yourself.

Nobody has ever walked in your shoes and experienced life through your eyes. The opinions of others do not matter. All that matters is that you feel you are being respected and treated properly by not just your doctor, but by you friends, family, and peers.

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When Self-Care Means Saying 'No'


I’ve been thinking about this since the beginning of the month – what is the most important piece of self-care that I practice? A lot of things went through my head. Some were downright practical, such as always taking my medications.

Others I enjoy: I paint my nails when I’ve had a busy day, as it ensures I will stop doing things for the half an hour it takes for them to dry. A face mask is good for the same reason! While these are on the scale between essential and enjoyable, there is one piece of self-care that keeps coming back to me. The one that has saved me again and again and again.

It’s when self care means saying no. And it was a really hard lesson for me to learn.

I suspect many of you are like me and tend towards people pleasing. As women, I think we’re raised towards people-pleasing a little; always be polite, pitch in, and to help out. Also, many chronically ill people are known to be at home and people assume that means we have time and energy on our hands to do things for them.

Whatever the reason, the point is we all have things that we know we don’t have the energy or time to be doing. Usually, when I ask myself why I am doing the activity in question, no matter the activity, the answer always seems to be the same – I don’t want to let someone down.

I started off very tentatively saying no. And it was really hard. However, and trust me on this, it’s a lot quicker to decline being president of the local sports club than it is to try and back out later when you’re over-committed, sick and unable to fulfill your duties. Yes, people gave a moments frown when I simply stated, “I’m unable to do that at this time.” I did feel judged, but for the barest moment in time. The alternative would have been saying yes and then have to make constant apologies as I was unable to turn up at the last minute, despite all my best efforts. Being unable to perform those duties once I had committed to them; that would be letting people down. Stating honestly that I am unable to do it upfront? That wasn’t letting people down at all. In fact, I soon realized it was a form of standing up for myself.

I vowed to do it more often.

Now, this makes it sound easy, I know. But years and years of saying yes, or worse, actively volunteering time and energy I didn’t have, was working against me. At first, I would begin, “I’m sorry, I can’t do that. It’s not that I don’t want to, but my illness means that…” and I would stumble on awkwardly making apologies and what may have sounded like excuses to people. This would take time and I’d become embarrassed. I decided I needed to work out a better way to say no without feeling so awkward.

A quote from my mother’s favorite actress, Katharine Hepburn, actually solved the problem for me. It went as follows: “Never complain.
Never explain.” That was it. I had my lightbulb moment. That small, four word sentence completely changed the way I say no.

Instead of apologizing, stammering and feeling awkward, I just stopped explaining myself. After all, I’m actually not sorry I can’t do it. I’m not Superwoman. I can’t do everything. In the same breath, by not explaining why I couldn’t do it, I found the whiny sounding excuses that were the reasoning behind my logic just ceased to be a factor. Just say no, very politely, you are unable to do it.

Then stop yourself. Just. Stop. Speaking.

Because it doesn’t matter why you can’t do it. In fact, why you can’t is nobody’s business but your own. A flicker of a frown or a half raised eyebrow are the closest thing to a negative response I have ever had – and I have used this trick for over 10 years now. No one is losing sleep over you saying no. Canceling things – that’s going to cause organizational problems down the track. But just saying no? That’s a knack. One that chronically ill people desperately need.

It took practice. My advice is to start small. Say no to a friend rather than your boss for your first try. Fight the urge to explain yourself. While you’re not explaining, stop that other half of the sentence which sounds like a complaint. Bite your tongue. Count to five. Jiggle your leg. Do whatever it takes to not continue. Personally, I like to imagine Katharine Hepburn in that moment; straight backed, chin thrust out with those steely eyes of hers locked onto mine, daring me to keep my mouth shut. I take a deep breath and let that image just sit at the forefront of my mind. Then the moment has passed. It is all over. You’ve successfully said no. The relief you feel will far outweigh the moment of discomfort. So much so, that I know it’s a technique that will work its way into your repertoire.

Try it. Say no today. You’ll be so glad that you did.

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