When Doctors Told Me My Chronic Illness Was ‘All in My Head’

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“High school is a difficult time in a person’s life,” the immunologist said. She then went on to suggest my joint pain, dizziness, nausea, fatigue and myriad of other symptoms were due to stress. She said I needed to take a break from all the medical tests. When I told her I’d had fevers in the evenings, she made it clear she didn’t believe me, as if I couldn’t use a thermometer correctly at 17.

I remember sitting in the room with my mom, stunned. We had gone to this hospital in the midst of a tropical storm, only to be told there was nothing wrong with me. When my mom asked the doctor if she would stop looking for answers if her own child were sick, the doctor backtracked. “I wasn’t suggesting that.” She was.

The immunologist wasn’t the first doctor to say my symptoms were due to anxiety or stress. While I recognized the impact anxiety could have on a person’s life, I knew I didn’t suffer from anxiety. The only thing I was stressed about was seeing so many doctors who never seemed to have the right answers.

Senior year of high school was supposed to be an amazing year. I was editor-in-chief of my school’s newspaper, a role which I had worked tirelessly for, and in the upcoming year, I’d apply to my dream school. At the end of my junior year, though, everything changed. A simple stomach bug turned into never-ending nausea. In two weeks, I’d lost 10 pounds without meaning to do so. I began to grow fatigued, had joint pain and felt unwell overall. I felt lost as more symptoms piled up.

In January, eight months after my symptoms first began, I became sick with the flu. Days passed by in a blur, and I felt dizzy all the time. Going to school became almost impossible as the world seemed to spin. I couldn’t drive and I cried when my mom drove me home. Make-up work piled up, and I felt paralyzed. I knew I was sick, and yet I had no answers as to what was wrong.

It wasn’t until March 15 that I got my diagnosis at the Mayo Clinic in Rochester, Minnesota. I was diagnosed via a tilt table test with a form of dysautonomia called postural orthostatic tachycardia syndrome, or POTS for short. POTS meant that my autonomic nervous system didn’t function the way it should have. My body wasn’t performing the basic functions as it should have, like regulating my heart rate or digestion. Every time I stood, the blood pooled in my limbs, and my heart raced to try and bring the blood back to my brain. All of my symptoms were explained by POTS.

Since my diagnosis two and a half years ago, I have spoken to many other patients with POTS. So many people have been told their illness was in their head, just because their doctors couldn’t find an obvious cause.

I want the doctors who told me that my very real, sometimes debilitating chronic illness was not “all in my head.” I was never faking my symptoms. I was simply desperate for someone to help find an answer and give me treatment. I met many doctors who didn’t know what was wrong with me, but I never begrudged them if they were kind.

Ultimately, doctors need to realize that patients know their bodies best. As patients, we will always remember the doctors who refused to listen. Likewise, we will always remember the doctors who treated us with kindness and helped us on our journey to a diagnosis.

Emily Deaton the mighty.2-001

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What Helps Me Accept the 'Chronic' Nature of My Chronic Illness

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There will be time, there will be time
To prepare a face to meet the faces that you meet;

There will be time to murder and create,
And time for all the works and days of hands
That lift and drop a question on your plate;        
Time for you and time for me,
And time yet for a hundred indecisions,
And for a hundred visions and revisions

— From “The Love Song of J. Alfred Prufrock” by T.S. Eliot

The word chronic comes from the Latin word “chronos” for time. Chronic illness simply means long-term illness. It’s a marathon on every level. What do I think is the hardest aspect of chronic illness? Well, it’s not the lack of understanding from society at large. It’s frustrating, but it’s something we can actively work to change. And it is not the endless symptoms, medications, treatments and consultations with medical professionals. That’s sheer endurance, but not the worst aspect of this life. It’s not even the heartbreaking armchair view of watching the fallout of your chronic illness on your family and friends. It’s something more insidious.

For me, the hardest part is the “chronic” nature of a chronic illness. Can you imagine getting sick and being told you will probably never be well again? Can you imagine facing challenges today, tomorrow and all of the tomorrows beyond that? “There will be time, there will be time,” T.S. Eliot wrote in his sad poem, “The Love Song of J. Alfred Prufrock.” So much time. Elastic, interminable, confounding time.

It will take a great deal of your energy, because you might learn early on people don’t always want to hear the truth about your chronic illness. They’d rather see you smile so they can move on. And as time goes on, you might prefer that, too. It’s so much less soul-destroying than trying to explain your illness with a chasm of disinterest staring back at you.

You might spend eons deep in your own thoughts and find entire worlds there. Ideas and hopes might be born and end before you’ve managed to make a step. But you’ll also find other ideas, dreams and pursuits in there that you’ll nurture. The distraction of creating things might just lift you from the fog of your chronic illness for a time. You may even create an entirely new you. A phoenix from your ashes. And there will be time for all that.

So, it is time. That’s the hardest thing about living with a chronic illness to me. Of course, the best advice for handling what feels like the tyranny of time lies in acceptance. But acceptance can be hard to find. Sometimes it flies away in the face of the realities of illness. It must be held like a butterfly, so you don’t destroy its wings. Lightly and with wonder.

Have you found acceptance as you travel across the days of your chronic illness? What helps you?

For me, it’s reading poetry, writing, thinking and creating.

It is letting the “slow” seep into my bones and watching the storms roll over. It’s letting go in tiny increments of the girl I used to know. And believing, even when the sands are trickling faster through the hourglass, that there will be a “time for you and time for me.”

Rachel F Cox the mighty
Drawing by Rachel F. Cox

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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When I Hear 'At Least It's Not...' About My Chronic Illness

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When you’re ill, particularly chronically ill, you’re inundated with advice from well-meaning family, friends and even, on occasion, complete strangers. I thought I’d dedicate this post to the one that seems to be a favorite of the well-meaning brigade, and one that really ticks me off.

“Well, at least it’s not [insert disease or life circumstance of choice].”

I have yet to work out how this is helpful to the person being addressed. In many respects, it assumes the person has lost complete perspective and is simply overreacting and whiny. Unless your head is so fully up your own bum that you couldn’t pry it out with a crow bar, you know that there are worse things in the world.

No one is immune from loss and illness. We all have tragedies in our lives. Unless you live under a rock, you know there is suffering around the world in the form of war, violence, famine and natural disasters, every day. On a smaller scale, there is the personal loss of loved ones and unexpected health and life crises. For myself, I’ve worked in palliative care. I have worked with women who’d survived the atrocities of the war in The Balkans during the 1990s. I have lost deeply loved family members. Like most people, I understand there are people enduring far worse circumstances than my own. You really don’t need to remind me.

When you give me the “at least it’s not…” line:

  • You are being nothing short of dismissive and trite.
  • You are negating my experience.
  • You are telling me that I have no right to what I’m feeling.
  • You are telling me I have no right to express that feeling.
  • You are telling me to be silent.
  • You are telling me my distress is unwarranted.
  • You are making me feel guilty.
  • You are making me doubt myself.

Is that really helpful?

Does it provide any solutions?

Any useful advice?

The simple answer is no.

Suffering is as individual as those experiencing it. What one person can bear another will find an overwhelming burden. How can you compare such a personal experience? I know other people are suffering and that for some, their suffering is beyond intolerable. That doesn’t stop me, or any other person, from feeling overwhelmed, or scared, or sad, or lost, or angry, or any of the other million emotions that arise with chronic illness. It doesn’t mean I don’t need support. It doesn’t change my circumstances. It doesn’t make my suffering any less real. And it doesn’t mean I think my suffering is worse than that of another. But it is mine alone and its salience can only truly be interpreted by me. Where is that line in the sand that says, yes, you finally have suffering worthy of complaint? And who decides what the line is?

The reality is, whatever anyone’s life circumstances, be it illness, loss or otherwise, there will always be someone, somewhere whose experience could be classified as worse.

Negating or silencing someone’s experience is not an act of kindness. You do not need to understand someone else’s experience to be able to show compassion. To let them speak their truth. To let them release that burden so they can start to pick their feet up once more and take the next step. Compassion costs you nothing, but it’s priceless to those who receive it.

Chronic illness is a long and often frustrating journey. It has no clear parameters. Some days it is better, some days it is worse. Often you can’t predict when either circumstance will occur. We experience loss in different forms, jobs, life roles, financial, social, our sense of self. We experience pain both physical and emotional. We have plenty to deal with. Why should we also be made to feel we must justify our right to feel upset or overwhelmed?

I, like most patients, know in many respects I am lucky. I count my blessings each day. But the days it gets too much and I’m barely holding on, a kind word or a listening ear is what is needed, not a reminder that others have it worse. Think about what you’re truly saying when you utter those words.

michelle roger the mighty

A version of this post originally appeared on Living With Bob (Dysautonomia).

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Why My Boss’s Text About My Chronic Illness Is Such a Big Deal

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It was a random day and time that I received the text. It was a link to the website “But You Don’t Look Sick” by Christine Miserandino. Specifically, it was to the page describing the Spoon Theory, which describes what it is like to live with a chronic illness, especially an “invisible” one.

In a nutshell, Christine (who has lupus) needs a way to help her friend understand what it is like to get through each day while dealing with the ins and outs of lupus. To help visualize and fully understand this, Christine uses spoons as a symbolization of the energy and effort she has to exert for even the most mundane of tasks that most healthy, able-bodied people take for granted.

To sum up, it has become a great reference for those of us with an invisible chronic illness to resort to when trying to explain day-to-day life to those who want to understand how we get through each day dealing with symptoms of our conditions.

 

The text I received that morning was from my direct manager at my job (who over time has become not only one of the most supportive friends, but also an amazing advocate for me both inside and outside the workplace).

The text was a link to the Spoon Theory, and it simply stated, “This made me think of you.” Of course, after years of being a part of the club I never wanted to join (club sick chick), I had heard of and read the Spoon Theory many times. But then it struck me. Had my boss really gone out of her way to try to understand my situation? Or even if she happened to stumble upon it, had she really read the whole thing, thought about it and then thought of me and how it applied to my life and my situation in and out of work?

While it may not seem like a big deal to most, to many of us who live with invisible illnesses, finding even one person who just “gets it” is no small achievement. Generally, the only people that “get it” are the people who also have it, as in also suffer from a chronic illness and have first-hand experience with life with a chronic and/or invisible illness.

To have the blessing of having someone in your life who goes out of their way to try to understand your situation (and even more impressively­, succeeds!) at doing so. Well, that is just one of the many blessing that has come along with having been unwittingly enrolled in this “club” that no one really wants to be a part of. And for that, I am truly grateful.

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Why, No Matter What, I'm Not My Chronic Illness' Victim

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Dear Dysautonomia,

Some of my friends have pet names for you. But I’ve never wanted to do that. Calling you something cute might give you the idea that I’d like us to be friends. I wouldn’t. I’d like us to be strangers.

I’ve had weaknesses in an area of my nervous system since I was a kid. And that was OK — just something about me I learned to make adjustments for. Those little quirks of my system — the fainting, the tummy aching, the tiredness — those things were just something to accept, like my lack of natural talent on the sports field. I had other strengths.

Then you arrived with full force. You came in through a window left open by a nasty virus. You turned my already wobbly autonomic nervous system against itself. You set up shop in my immune system and began to wreak your havoc. First, you had a go at my heart. They put in a pacemaker to limit your influence. Then, my vision, my digestion, my ability to go to the toilet. They gave me pills and potions, enemas and catheters. For every trick you pulled, we tried counter-maneuvers. Few of them were effective. You made it hard for me to regulate my temperature and threw in some dizziness every time I moved into an upright position. You drowned my days in bone sapping fatigue. You shifted my career well out of my reach. I felt so purposeless.

There were times when I even felt like you’d taken the best years of my life. A new marriage, the motherhood I’d longed for. These gifts were tarnished because I couldn’t be the wife and mother I yearned to be. I was angry with you for that. On behalf of the beautiful people I call my own, too. I was so angry about the freedom I’d lost to you, they’d lost to you.

I hoped. For six years, living with you, attached to my every move, part of my thought process. I hoped.  Someone will discover something, I thought. Medical advancements are happening all the time. Maybe they will identify something important in their minuscule research studies. And they are. Little by little the scientific community is inching its way towards something. I found a keynote presentation by a neurologist in the U.S. A man who’s studied autonomic ganglia for years. It flicked a switch in my brain, and I began to see.  There might be a way to finally let you know, Dysautonomia. You’re not welcome here.

And now, I’m on a promising pathway; I’m getting the movers in. I just wanted to write you a little letter as we approach your eviction. Like a victim impact statement. All those things above, they’re painful facts about why I don’t like what you’ve done to me. But there are other facts too. Surprising gifts you’ve given, even as you’ve be rampaging through my life.

You taught me I could find things out. Figure things out. Things way beyond my artsy brain. You led me to patient groups where I’ve found some of my staunchest friends. And you forced me to rearrange my interior self. To consider who I am and what I want to be remembered for. To identify the things that really matter.  To let the people I love know how I feel. And you gave me back a gift I’d dropped a long time ago. You made me write again.

I don’t know why it takes hardships to gain insight. But it does. Being sick with a chronic illness, dealing with you, Dysautonomia, seems like too harsh a price to pay, but I would pay it all over again. To learn what I’ve learned, to become who I am becoming. I would like to tell you that although I don’t like you, didn’t want you in my life and would dearly love to see you go, I’m grateful to you. You’re my shortcut to wiser living. A portal into a new and better me. 

Thanks for that.

I also want you to know, that even if I can’t eradicate you from my life, I will always be, 

your ex-victim,

Rach 

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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To Each Illness I've Had to Fight, This Is What You've Taught Me

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Dear Illnesses,

Enthesitis– You are my oldest constant companion. For years no doctor could find you and yet I was well aware of your presence. At age 10 you started to attack me, stripping me of my active lifestyle. But, for all you took away from me you have given me just as much if not more.

You taught me how to fight and that doctors do not always know best. You taught me perseverance from a young age. Without you I don’t think I would be able to handle my other health issues. Thank you for preparing me for the world. I wish you waited a little longer to show up but I am glad you came.

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Uveitis– You took me by surprise, possibly the only condition to accomplish that. I will never forget the day you were found in my left eye. I was scared and not sure what lie ahead. I still have a fear of eye drops and all things near my eye thanks to you. You taught me sometimes I have to do things I hate but that’s just the way it is.

AMPS/RSD– You were the first to affect my nervous system– foreshadowing my future. You taught me to work hard even when the goal seemed unachievable. I learned about persistence the hard way thanks to you. The lesson, slow and steady wins the race, became my motto to defeat you.

Celiac– Your timing was just about as bad as it could have been. The week before finals my first semester of college. You taught me how to make my voice heard, how to stand up for myself. You made me outspoken and helped me to let people know what I need. You taught me to be creative and how to make a gourmet meal in a microwave.

Gastroparesis– I do not even know what to say to you. You have taken away one of the most basic joys in my life. I have had to adjust myself to you and your needs. Controlling does not even begin to describe you. Yet you have taught me to enjoy the little things in life. I no longer take being able to enjoy a small piece of chocolate for granted.

POTS/Dysautonomia– We are still getting to know each other. At least you had the decency to first show your affects on me in front of every single doctor on the GI wing– a double edge sword. You are a tricky one, most doctors do not know what to make of you. You have taught me how integral planning is, how the smallest mistake can take a week to fix. On the bright side you have given me an hour of relaxation once a week during my infusions.

As a group you guys have tested me and put me through the ringer. Yet the struggle has made me stronger. I am now equipped with confidence and integrity. When I look back on all I have faced and the battles I have fought I know I can push forward. For that I thank you.

Sincerely,

Joan

A version of this post originally appeared on Life with a Flare.

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