The emotional ton of bricks of diagnosis and denial

When I was diagnosed with rheumatoid arthritis, it was really scary. I had a lot of sad/destructive thoughts…

  1. My joints are going to become deformed and I’ll look scary to children. They will think I’m an evil demon witch. That’s 100% definitely going to happen.
  2. I’ll need to get my joints surgically replaced. All of them. 5 times over. Definitely.
  3. My lifespan is decreased 5-10 years.
  4. I have to take chemo medication for the rest of my life. I bet that’s not going to feel very good. The cancer patients don’t seem to enjoy it. I’m going to lose my hair, right?
  5. I’m too fat for my crappy joints.
  6. I’m going on disability, there’s no way I’ll be able to work.
  7. I’ll be stuck on my couch forever, like a hermit, even worse than usual.
  8. I’ll be extra bad at sex now.
  9. My parents are gonna frrrrrrreak the fuck out.

I also had some really happy thoughts…

  1. FINALLY, a diagnosis! Jesus christ, I did it!!! I found it! It took long enough. I know what’s wrong with me! Hooraaaaaay!!!! 😀 😀 😀
  2. I can focus on getting better instead of focus on finding out what’s wrong!
  3. Now people will believe me! 🙂
  4. Now I’ll be able to take medications that treat the illness instead of just the symptoms.
  5. It’ll be easier to get pain medication when necessary now that I have rheumatoid arthritis. Fuck you, doctors who never believed me (middle finger + sneer).
  6. I wonder if I’ll ever be able to get a prescription for weed… (the answer is yes, in some states, I totes could… not in NY State yet but it’ll happen)
  7. My parents are gonna be so happy!!! (when I get medicated and feel better)
  8. I bet I might be able to actually plan stuff again if the medications work (THIS TURNED OUT TO BE TRUE)
  9. Pickles!!! (I wanted to have the same number of happy thoughts as sad thoughts, and I really like pickles)

Obviously, some of my thoughts were real concerns, real joys. Others were ridiculous and stupid. It’s so incredibly complicated when you get that diagnosis after years and years of being sick. I’m still digesting it and it’s been months. My biggest problem now is I periodically insist I don’t have rheumatoid arthritis, and I believe I’m somehow “faking it”. My boyfriend finds this deeply disturbing, as he witnessed me in agony on the couch for extended periods of time, and remembers me having such a difficult/painful time getting into work I’d arrive covered in sweat (he was recounting this to me recently when I asked him to remind me what pre-methotrexate days were like). That is, when I made it into the office at all…

My RA presents with less swelling and stiffness now because I caught it early and treat it very aggressively. In other words, I’m young and taking my drugs so I’m not doing as poorly as some 70-year-old woman who went untreated for 20 years. You’d think this would lead me to understand why my joints aren’t very swollen, but instead, I keep thinking, “Oh, I must not have RA!” That’s a real thought I have fairly often. Regardless of how much pain is in my joints. Or if they are stiff or anything… I am genuinely incapable of squatting all the way and then getting up–and I know that’s a thing most people can readily do all day long if they want to–yet I am typing to you trying very hard to acknowledge that I have the disease I know I have, a disease I’ve been diagnosed with, I’m being treated for, AND the medication is working really well, remember…

Why am I so fucked up, one might ask? Years of doctors not believing that I was in pain when I told them I had headaches and neck pain, that’s why! I was told so many times nothing was wrong with me I started to believe it. Eventually, doctors started figuring out that things were wrong (unrelated to RA, a number of disc herniations in my cervical spine causing me a lot of neck pain, for example, which would have been discovered immediately and I could have done PT for it if anyone bothered to do an MRI… assholes…) but by the time I was getting diagnosed for the pile of health problems I’d been accumulating I’d already developed some fun new assumptions that I am still trying to shake from my subconscious (and semi-conscious) mind.

  1. Don’t trust doctors.
  2. Doctors don’t trust me.
  3. Don’t trust myself/it’s all in my head.

I guess I thought when I was diagnosed everything would be simpler. WRONG. 😛 Things are a lot better but they aren’t simpler. I still have to work through aaaaall my emotional shit. Being initially listened to and subsequently believed by a rheumatologist and getting a diagnosis didn’t suddenly make me trust all doctors… and it didn’t make me think all doctors would believe me if I went to them and told them I had some symptoms. And it certainly didn’t cure me of the “it’s all in my head” problem I’ve developed. I inject myself with methotrexate every week and I’m still saying, “you’re making it up, it isn’t real….” (blank stare) Normal, right?

I am deeeeeeply disturbed! I’ll keep working on it. 🙂

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Mama, I got the rheumies! (or, Finding out I had rheumatoid arthritis)

Last October, I was diagnosed with rheumatoid arthritis. That was kind of a bummer, because last summer, I was diagnosed with fibromyalgia. And prior to that, I was diagnosed with chronic migraines and IBS and herniated discs and occipital neuralgia… ya that’s all the physical things in a nutshell. Okay there’s some others but I can FEEL you getting bored.

So you can see how I was a little… disturbed. A normal person would be disturbed by that diagnosis. But I’d spent several years getting increasingly sick and isolated. I spent a lot of time on my couch, not seeing my friends. Canceling on plans I’d actually managed to make with friends or family. Becoming a hermit. Not going out to restaurants with my boyfriend very often (if ever, okay, to be honest). Doing almost nothing outside other than playing pinball occasionally and traveling to and from the office, which was a rarity because I worked from home most of the time. It was exceptionally depressing.

When I was diagnosed with rheumatoid arthritis, everything fell into place. Why were my headaches getting worse and worse? Not just because of the fall I’d sustained when I was 16, but because my immune system was attacking the top joint in my neck (that’s the only joint in your spine, btw). Why all the gastrointestinal problems over the last several years? Well, people with RA happen to have a lot of gastrointestinal problems. Why did I get sesamoiditis a while back and end up with my foot in a boot for several months? Because it wasn’t sesamoiditis at all. It was a rheumatoid arthritis flare and my then-doctor was wrong… which happens all the time. In fact, having a flare-up in that particular joint is very common as a first-place for a rheumatoid arthritis flare. Diagnosing RA is a real bitch and often takes years. You need to do a lot of tests (blood tests, sometimes xrays, sometimes MRIs, you need to see a few different kinds of specialists to rule out certain things, which I’d already done prior to seeing a rheumatologist). Plus you talk to the rheumatologist about your history, of course. They look at your joints, talk about stiffness in the morning (hehehe). WELL I have it, folks. I have it. It runs in my family, and poof, I have it.

I’d been getting sicker and sicker for years, and now I know why, FINALLY. A DIAGNOSIS. If you are a chronically sick person, you know exactly what kind of feeling I had in that diagnostic moment. Terror? Yes. But relief? Also, yes. It’s horrible not knowing what’s wrong with you. When I found out what was wrong, though, I could finally do something about it. That put me, at long last, on the offensive. I had power. I had agency. Look the fuck out, because I’d spent years being attacked by my body and finally had the opportunity to do something about it. I was about to get very aggressive…