Huh? Anybody who has known me longer than a millisecond knows that telling me that I’m faking it is a very quick way to set me off. One of my closest friends texted me that message a couple of weeks ago. I knew there were multiple layers there, so it’s running around in my head since then. My brain is a lot slower than it used to be. It made a connection, but in slow motion…
Every time a doc tells me that I exaggerate, or dramatize, or it’s all in my head, all my friends hear about it. It’s a huge ‘button’ to press. She’d dropped by with her kids, and I had a nasty reaction before she got here. She’s one of the few people who I will see when I’m that ill- I’m not usually up for company. She stayed a short time, and was off. She texted me a few minutes later. ‘You fake it well.’
She’s right. I never fake illness. But I fake wellness extremely well.
It drives me crazy when doctors dismiss me. I’ve tried for ages to figure out why it is SO common in MCAS. The vast majority of us have at at least one doctor say that they had somatoform disorder, or Munchausen’s or some variety of factitious disorder. There are many reasons- it’s hard to prove, we don’t ‘look’ sick, and if you list the symptoms of a mast cell mediated reaction, they look a lot like panic attacks. (They feel completely different). Most of the possibilities discussed are about the challenge of diagnosing MCAS. And yet, a very clear diagnosis is still dismissed, and even when I do convince them otherwise, they revert back in an instant.
A few weeks ago, I had an iron infusion in an ambulatory clinic. The doctor was curious as to why I am burning through iron so fast. So he went through his checklist: Hormones, excess blood loss during menses? Last winter, yes, but not in the last 6 months. I am horribly malnourished, he wasn’t convinced that could be it. Blowing up blood cells at a great rate…maybe. He asked if I’d had intestinal bleeding ruled out. Nope. I’ve been referred to four gastroenterologists in the last two years, all have declined to see me… Poor guy was completely confused. I finally said that the phrase ‘it’s all in your head’ came up far too often. His response was immediate and unfiltered… he said “Seriously? You can’t fake that!” and gestured towards my whole body… He continued in a cartoon voice. “Okay body I want you to make my skin look like porcelain, and get lots of rashes!” He sighed, “You can’t make up that skin. You’re born with it!”.
Last week my GP was filling out tax forms with me (they are SO not designed for me…), and we came to ‘walking’. She said ‘Well, that’s not an issue.’ Ummmm…yes it is!! I said “Hold on, back up a bit. It’s improved, but I would say that two blocks is the maximum.” She asked what I meant, what stopped me. “Fatigue, weak muscles and joint pain, add them all together.” She looked startled. “You have joint pain when you walk for only two blocks?!?” My answer flew out before I could stop it. “Uh, yeah! I can’t remember the last time it didn’t hurt to walk.” She was utterly surprised. I continued “It’s so much better now than it was when I first met you…”. Nothing has changed, and there really isn’t anything to be ‘done’ about it, so I don’t mention it. Apparently mentioning it once when I met her almost two years ago wasn’t sufficient (ooops- that’s on me. She can’t tell how I’m feeling unless I tell her. And it’s not fair to assume that she has stored most of our conversations verbatim.). We had a bit of a conversation about it. I reminded her about the day she met me. I had had some difficulty with an injection medication. I didn’t have the right word, so I said I had welts. When I pulled up my sleeve, she gasped. “You call that a WELT!?” “Well, yeah, I know that isn’t right, but I don’t have the right word. What would you call it?” “I don’t know, but welt is not it…”.
I think I may be onto something here. Doctors see that something isn’t ‘right’. Our words and our body don’t match. Doctors are analytical, and generally relatively intelligent. They see something illogical, and try to look for an answer. They come to the conclusion that this is because we are faking our symptoms, not the other way around. The more I am questioned, the harder I try to not look like a wimp, and that makes it worse. WHAT if I need to complain more, not less?
I’ve been practicing faking wellness for 40 years. When I was a small child, I learned that what I sensed (physically felt) was off. I either hurt too much, or too little. I have heard “It can’t possibly hurt that much” and “You can’t have done what you describe, it doesn’t hurt enough.” many, many many times. What I felt was ‘wrong’. I learned to chose my words carefully when I was re-telling stories, making what I felt fit into the expectations of others. I didn’t dislocate my shoulder, I separated it. I didn’t dislocate my ankle, I ‘tweaked’ it. Stings and bites weren’t excruciating, they were ‘itchy.’ I wasn’t going to faint, I felt ‘woozy’ (note to other masties…normal people don’t keep standing after their visual field has gone black. Who knew!?). Here’s the thing though, that means when I do bring something up, it looks like it’s coming out of the blue. I don’t look like I’m in pain until I go over a 7/10 on the pain scale. At 8/10 I look just like anybody else- no wonder they think I’m being ‘dramatic’. I thought that others could see it, after all I’m a horrible actor (seriously- awful. Spectacularly awful… As my best friend knows well).
I look like I’m faking it because I AM FAKING IT.
So, my mastie friends. Are you ‘too good’ at looking well? How well do you fake it?