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When a Doctor Told Me Not to Think About My Ehlers-Danlos Syndrome So Much

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Living with a chronic and rare condition like Ehlers-Danlos syndrome in Germany, I thought nothing could shock me anymore, until I went to see a new neurologist some time ago.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

It took me a long time to decide whether I wanted to write about this experience or not, because after two years I found a pretty amazing team of doctors to support me. But before that, there were far more negative events than positives in my disease-shaken life.

Seeing a neurologist always makes me a little nervous, since in my experience they often prefer to diagnose EDS patients with depression and seem to ignore why you are really there. But a neurologist was the only member in my EDS care team that was still missing, and I wanted to give it one last try.

After a sleepless night, and in a lot of pain, I showed up to my appointment with a local neurologist. As always I came well prepared with a list of things I needed, and some publications about EDS and all the comorbidities I am dealing with, because he admitted to not knowing much about my conditions. After listening to me for about five minutes, the atmosphere suddenly changed when I heard him saying: “If you would not think about your condition so much, you could live a normal life.”

This was a very well-known scenario for me by then, in which I immediately find myself pushed into a corner, ready to explain myself, my symptoms and why I am acting like I do. But still, every time this happens to me, I am shattered and close to tears. Comments like that are very hurtful, disrespectful and lead me to ask myself what I am supposed to do.

Is there a way I could live a “normal” life? Could he be right?

Karina walking down a road.
Karina walking down a road.

First of all, it is no problem for me if he would admit that he knows little about EDS. It is rare and complex, and no two patients are the same. But then he isn’t in any position to tell me the way I am handling my disease is wrong.

What does wrong even mean? Is there a wrong way to handle a disease?

I do not think so. As long as the patient is as happy as possible, and lives their life the best they can, there is no wrong. All people have different personalities and cannot be treated like a lesson in a medical school textbook. We need a little flexibility.

Is my life defined by EDS?

I believe that everyone who has a chronic condition like EDS and whose life involves seeing one doctor after another is somewhat defined by that disease. How can it be different? A chronic condition is a huge part of one’s life, especially if you try to manage that disease as best you can.

There will always be medical appointments, physical therapy and other important tasks related to my condition. My life depends on specialists who help me increase my quality of life. But that does not mean it is fun for me, and it doesn’t mean there are no other things in my life besides my disease. It only shows that I have no choice other than being involved in my health care.

If I don’t take care of my own health, nobody does. And I really do not like to be criticized for something I would have never chosen for myself.

What would my life look like if I stopped thinking about being sick? I would suffer tremendous amounts of pain, probably enough to be bedridden. I would not be able to see any friends, and have no social life at all. I would not have any doctors who help me. I might not even be diagnosed with EDS, because I would be too sick to think clearly.

That doesn’t sound like a “normal life,” does it?

So please, doctors, understand that I know what I’m doing. I have been living this life for years. I know exactly what I feel, and most of the time I already know why I feel it. I am used to educating myself about my diseases and figuring out what is wrong by myself. You, as a doctor, should not criticize this but value my commitment. You should work together with me instead of trying to tell me how I am supposed to feel and what I am supposed to do. You need to understand that doing something about my condition gives me some sort of control, and being involved in my health care helps me to accept my disability.

You have no right to tell me that my pain is not real, or my way of living my life is wrong, because you simply do not know. Those little comments can lead to depression and weeks or even months of distrust in other doctors, and take away my dignity and self-confidence.

Telling someone with a chronic condition their way of managing their disease is not right is like jumping on everything they worked so hard to achieve. It is like telling me I am a loser, and all I have done to get where I am today was wrong.

I know it is not true. My way of coping is the right way for exactly one person. Me.

Follow this journey on Karina’s website.

Originally published: May 13, 2016
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