I am emotional in most GP visits because the doctor has to touch me and it hurts. Also, sitting in the doctor’s office feels like my denial blinds have been lifted. At least outside the office I have a measure of time where I’m not thinking of my body and what has been lost, but being in that office is different. I know why I’m there. I know that faking a smile isn’t going to work. I feel vulnerable and I cry. I chatter on when I’m nervous but I can tell you what hurts, where and how it feels different from the normal pain.

I’ve been told recently that expressing clear needs to medical doctors can be problematic. I used the word recently because this isn’t news to me. I’ve heard it a thousand times. I’ve also hear it said, ‘You’re more involved in your health care than we’re used to seeing.”

What’s interesting is that I no longer have faith in you. How do I put faith in a community that has no faith in itself? Doctor’s constantly put down their peers down. I’ve had GP’s tell me to stay away from pain specialists. I’ve had orthopedic specialist talk bad about other orthopedic specialists and rheumatologists. Nurses in office will talk bad about the doctors and tell you what medical practices they think are quackery. If you can’t even agree among yourselves how to treat the basic needs of a patient then how do you expect me to put my trust in you? You don’t even respect each other.

I have gone to physical therapy countless times. I’ve done this and that test. I’ve tried this and that medicine. I’ve had this x-ray, that scan and this blood test. I’ve got this and that brace. I’ve done it all. But, I no longer do everything you want me to do. I have started saying no to tests and therapies we’ve tried numerous times. You know before I leave your office why I decline a specific treatment.

I don’t live by, “Let’s try it and see.” Running here and there trying this and that treatment wears me out and I get nowhere with it. I can’t do that anymore and won’t.

I’m an exhausted, angry, blubbering mess, but some times I’m better held together and can tell you how much chronic illness erodes the mind. I sit in your office with PTSD symptoms related to my physical health, a concept I wasn’t even sure of until my psychologist began talking to me about it. I’m terrified of what my body has done and what it can do to me. Being able to look back and see a night I survived isn’t just humiliating, its terrifying. I try to throw those images out of my head. I’m scared and that fear is strapped to me the same as illness itself. I’m scared.

I’m resourceful and I’m strong but there are times when I’m just knocked down. I may be strong but I’m only human, and humans break. We break, we fall and sometimes we stay down for a little bit. Some call it pity but I just shake my head at them. I’ll get up when I have the ability to get up. I don’t give up easily. So don’t treat me like I’m in pity mode if I break but don’t get up as soon as you think I should.

While there is anger at the medical community who can’t seem to get their crap together and whose competitive antics impede care, I admit I do not blame you for what my body is doing. I call you out on ill-treatment on crossing boundaries, squashed chances to be of assistance and on your haughty behavior.  You are a problem but you didn’t give me Lupus. I was diagnosed with Lupus as a child. My body has done this since I was really young and I’ve known what’s ahead, it’s just that I never expected to experience it. It’s one thing to know what to expect and quite another to experience it.

Living with Lupus and its countless tag along disorders is cruel. Chronic illness does not yield to life changes such as perimenopause. Chronic illness does not yield to mental health issues, relationship issues, deaths or anything else. It does not yield.

I come to your office stressed out, denial blinders off and 40+ years of pain and treatment resistant illness. When I walk through your door and sit on your table I walk in refusing to hope that you can help, but needing it more than anything else in the world.

I need out of my skin.

I am a chronic health patients who tries, who gets some stuff right and other things terribly wrong, but I try. Try isn’t the right word. I’m driven and that makes all the difference doesn’t it? Even when medical professionals fall short or flat-out fail, I can count on this spirit of mine to figure out a way to keep going. Hats off to a driven, determined, living spirit!


1:45 am EST June 28, 2017

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