Chronic Illness and Mast Cells

The Burden of Being Undiagnosed

I have seen a lot of physicians.  I’ve seen good, bad, and everything in between. There have been some that have helped, some that have tried but failed to help, some that didn’t want to help, one that had “issues” and I fired (a first and hopefully last for me), many with good intentions, some that labeled me as crazy, and then the ones that not only labeled me as crazy but also ran interference with my care.  The latter is the absolute worst of the lot.

I was around age 15 when I first encountered the last two types, but the latest one that I encountered completely caught me off guard. Why you ask? Because he not only denied some of my worst symptoms of which I have records & documented proof, he also spoke of my local physicians as being complete idiots that have hospitalized me multiple times for absolutely no reason. To add insult to injury, he wrote a convincing enough report that I feel has interfered with me getting an unbiased opinion from the rest of the new physicians I had consults with at the clinic.  He did me A LOT of HARM. His unfounded opinions, complete dismissal, and false statements made in my medical records created a snowball affect that I am still reeling from.

Because of this, I am back at square one. A place that I never thought I would be back at again. I had hope this time would be different. I believed that by going to a facility whose primary mission statement is to “put the needs of the patient first” I would be treated with respect instead of the usual “she’s crazy” dismissal.  My expectations were not met.

I’ve had this experience more times than not with a variety of healthcare providers. I can’t even tell you how many. I lost count a good while back. Usually I can shake these negative experiences off, but my ability to do so has weakened significantly.  The frustration and disappointment is nearly impossible to put into words. It shook me to my core.  How can someone who is in the position of helping people brush off my symptoms with such a cold aloof attitude?

I am a fighter, but I am so very tired. Tired of being sick. Tired of being told I just think I am sick. Tired of being labeled as crazy. Tired of being told I am a medical mystery. Tired of being told I will never have a diagnosis. Tired of being told “I don’t know”, but “come back in 6 months”. Tired of putting on the brave face at baby showers and when someone else announces their latest pregnancy.  Tired that I’m not living my career. Tired that life is running laps around me and I can’t keep up no matter how hard I try. Tired of feeling abandoned by people I always thought would be there for me. Tired of so much loss.

If I could just push through, I would. If I could ignore my symptoms, I would.  If I could will myself well, I would.

I can’t. My body will not let me.

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