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When You're Undiagnosed and Afraid of Yet Another Disappointing Doctor's Appointment

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Dear Ashley:

I write this to you as we are now only six days away from the very anticipated and long awaited for appointment at Johns Hopkins. I know you are scared. I know all the feelings that are running through your mind as you’ve experienced them so many times before.

You’ve been sick for approximately eight years and nine months now. That’s 452 weeks of wondering and 3,164 days of waking up hoping the pain that riddled my body the day before would finally be gone for good. Pain that is supposed to be your friend, one just passing through sounding an alarm that something is wrong, has overstayed its welcome. No one has been able to make it leave and no one can figure out why it has even decided to stay. Eighteen doctors and countless tests revealed only more questions. More confusion. More wondering.

And this appointment coming up has you walking down memory lane. All the times you heard: “You look fine,” “Go live your life” or the alternative that I’ve also heard many times: “There is definitely something wrong with you. Just what, we don’t know,” “You need Doctor House” or “This came back abnormal. But we don’t know why.” One doctor led to another, which led to more questions.

But a few years ago, you decided to take it on yourself to be your own advocate for your health. Can you remember how far that got you? You decided once and for all your doctor’s lack of answers and glossing over everything was enough. This took you across three states, with each doctor filling in a piece of the puzzle. At the time you still felt a bit hopeless, but in their own little way they provided direction that eventually got you to where you are today — diagnosed with undifferentiated connective tissue disease — which basically means you have autoimmune disease, but not defined.

The last couple of years you were happy with that diagnosis. That was enough for you; it proved to everyone what you had said all along about yourself. There was something wrong and it was deeper than the doctors wanted to see.

But as time has passed, new procedures and tests have been done. More questions are being raised. Fears are growing, new issues are rising and more questions are remaining unanswered. It was time to start your journey again.

But with that comes feelings bubbling up that I’ve tried to push down for two months consisting of questions like, “What if they don’t help me?” “What if they can’t give me an answer either?” “What if I’ve hoped about this for nothing?”

For all those facing the same, I write this to you as I write it to myself:

You might not get answers. They might not help you. The best of the best might let you down. And it might hurt; in fact it might hurt really bad. It might make you feel like giving up. But don’t. Please don’t. You know yourself that you need answers and it is not in your head. It is very real. And if you don’t give up, then one day you’ll get your answers. It might take eight years, it might take longer. But one day you’ll get them.

Stay strong for your family or for your children who might end up just like you. If you get answers, they might get them, too. Stay strong for the ones who don’t understand what you are fighting so hard for, so if it ever happens to them, you can urge them to never stop either until they have answers.

And stay strong for you. Remember that one doctor might not solve your mystery. They might only discover a clue. Remember each clue is a step forward. Each piece will help solve the puzzle eventually. Just stay strong so you can get there, so you can see the puzzle completed.

And until you do, it’s OK to cry. It’s OK to feel broken. Just don’t give up.

Pick yourself up after you’ve let it all out and start over again.

Originally published: September 22, 2016
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