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Accepting That There Might Never Be a Diagnosis

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About a year into my search for a diagnosis I went back to my neurologist. So far nobody really knows what’s wrong with me — all my blood work seems to be perfect, too perfect even, but the only thing that works for me is an ongoing therapy with prednisone.

I was pretty nervous, since there was more than one doctor who told me it is all in my head and tried to refuse to write prednisone prescriptions. Every doctor I do not know, or do not know well, is scary.

I did not expected anything really helpful. It was just for a check-up since they found some lesions in my brain last year nobody could explain, but the last MRT showed nothing new.

The good news first: She listened and believed me, and asked questions that made sense. The first hurdle was taken, she took me serious. My mood picked up, maybe this would be the visit which would yield results. The long familiar mixture of hope for a diagnosis and fear of a diagnosis started to run through my body.

She started talking about how it looked like some kind of systemic autoimmune disease. She considered multiple sclerosis highly unlikely and told me that some people simply have lesions in their brain and the reason is never found. Nothing new here. At least a doctor I could go to without fear of being ridiculed, and I never really expected a neurological result.

But she kept on talking. About, how neurological and rheumatologic diagnoses often take years, even with the best doctors, since the symptoms can appear years before anything in the blood work is found. At least she did not seem to give up on me, like too many other doctors.

And then the sentence that changed so much. Not a diagnosis, not a plan what to do next. She told me, “But you have to accept that there might never be a diagnosis.”

She went on, that there are most likely many diseases that are not categorized yet, or the diagnostic tests are not yet developed, that she and her colleagues have a folder of undiagnosed patients they regularly look into when a newly discovered syndrome or testing method is found. Happy to have found a second doctor who really cares for her patients, I still left stunned.

While I managed to pick my life up again after I found out prednisone worked, I still lived somehow on hold.

I went back to work, went out with my friends, at least on the good days, when I was not too drained from work, and tried to live my life as full as possible, but I avoided plans for the future. How could I plan long term if I did not know what’s wrong with me? My plans and dreams focused on the day I had my diagnosis. The day life should somehow become predictable again, even if it is a bad prediction. I spend so much energy while searching for a diagnosis; was that all wasted?

And then I realized. This is my life now. And I will not put my life on hold any longer while waiting for a diagnosis. I will not abandon the search totally, but it will no longer be my priority. The influence I have in finding a diagnosis is limited, and I will use my energy for the things I can influence, my job, my relationship, my friendships and my hobbies.
And for the first time since I got sick, my illness is not devouring my life anymore.

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Thinkstock photo by MariaDubova

Originally published: March 30, 2017
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