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When You Actually Want Doctors to Find Something Wrong With Your Health

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I am one of the few people in the world who actually wants something to be wrong with them.

I get frustrated when my neurologist tells me my MRI was unremarkable, or that my nerves are working fine. I become angry when another test comes back inconclusive. I cry when my general practitioner tells me he does not know which specialist to send me to next. For most people it is good news when a test comes back negative. For me, this is not the case.

This is what it is like living with chronic undiagnosis. You desperately want something to be wrong, but at the same time you also do not want to be sick. You constantly flip between the feeling of “thank goodness I don’t have that” to “why don’t I have that?”

As humans we enjoy labels. We like to be able to organize people into neat categories so we can make sense of the world and our place in it. We also do this to ourselves. We assume an identity based on where we fit amongst others and find our place in a community of people who have been labelled the same.

I think it is this unconscious desire to label ourselves that leads many of us with chronic undiagnosis to become withdrawn, as we simply do not know where we fit in anymore. In the outside world, we may feel like strangers. We lose part of our selves with an illness and without a diagnosis there is nothing to replace it. We do not have a colored ribbon to wear, there is not charity we can support and there is certainly no Chronic Undiagnosis Awareness Month. I am ashamed to admit that I find myself looking on with jealousy at those who have fibromyalgia, lupus or chronic Lyme disease. I want to have what they have. I want a diagnosis.

However, lately I have realized that this constant search for an answer may have more to do with other people than myself.

When someone asks me why I have chronic pain the conversation goes something like this:

“So, what is wrong with you?”

“I don’t know.”

“Well, haven’t you seen a doctor?”

The last remark is always the one that hurts the most. I never know what to say. I could tell them about the pile of blood work that gets sent with every new referral, the invasive and often humiliating tests I have had to endure, the time spent in waiting rooms surrounded by people three times my age. Instead I simply sigh and tell them what I don’t have, but I can still sometimes tell that they think I might be faking for attention.

It is these interactions that make me so desperate for a diagnosis. I would love a one-word answer for what is wrong with me. It would mean that finally my pain is seen as a little more legitimate than it was before. While having a label will not take away the pain, it will make others see it more easily. It means that even though they might not know what the illness is, they can put me in a neat little box and move on with their day. They can say I am the girl who has ___, and I can also say that about myself.

But this way of thinking can be damaging to the chronically ill. Having a label can often give us something to hide behind. When I was given my other diagnoses, I immediately thought that was who I was. I was the sick girl. The one who missed parties, who was flaky and unreliable, who had to run to the bathroom at the drop of a hat. The diagnosis of irritable bowel syndrome and polycystic ovarian syndrome was one of the best and also worst things to happen to me. I had a label, but I found it was one I did not like.

It is a difficult balance to strike between wanting a diagnosis, but not letting it label you. I am so much more than my illnesses. I am a human being with aspirations, fears and hopes like anyone else. By remembering this, I realize that my constant search for answers has more to do with how others see me than how I see myself. While a diagnosis is important for treatment and management of a chronic illness, it can also rule our lives. I refuse to let this happen. I refuse to be damaged by my desire to be labeled. I refuse to be the girl who thinks of herself solely in terms of her health. I am seeking a diagnosis for me so my body can receive the treatment and healing it desperately needs, not so I can be put in a box.

For the time being I will continue to seek the truth about what is happening to my body, safe in the knowledge that I am doing it for myself and not others.

Originally published: August 30, 2016
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