I’ve been seriously ill and hospitalized twice with colitis. Colitis is all about blood and shit, in case you didn’t know. We’re taught shame about shit. Big girls don’t pee the bed or poop their pants. So, who are you when suddenly your day revolves around it? With all autoimmune disorders, it’s your body turning against itself. How do you not internalize that powerlessness and bake it into self hatred and shame? MS, Celiac disease, Epstein Barr, Lupus, Rheumatoid arthritis. What does that say about you when you suddenly can’t control your own body?
I got to spend some serious instant message time with a pal, chatting about his yet to be diagnosed debilitating illness. It’s hard to talk about being sick with someone who isn’t or has never been. Everyone wants to fix you — they can’t. Then they need you to say you’re getting better anyway because your illness scares them. Chronic illness makes people uncomfortable.
My friend Lyle was battling cancer the first time I got sick. I hated myself for being ill & weak and unable to fix myself. I hate that he had cancer, that he suffered and died. I’m so grateful we were sick at the same time and had each other to talk to – because really, the people who love you, they love you, but they’re so busy being distraught over their powerlessness to fix the situation they can’t hear you. It was Lyle who convinced me to check myself into the hospital. I was too weak to even sit up and answer the phone, but still, I had needed someone to validate that this was illness, not weakness.
In the hospital my illness wore me out, it took the fight right outta me. I’d lost so much blood couldn’t even sit upright. We had tried this medication & that, diet changes, specialists, more meds & transfusions and I just got worse & worse & I thought, I’ve had a good life. I’m tired. I’m ready. I wanted to just let myself die.
Lucky for me I had a doctor who was smart enough to prescribe anti-depressants. There is no healing without hope.
A close friend has colitis as well & while each of us hates that the other has bouts of suffer & deal, we’re happy we have each other to talk to about it.
I hate that my friend is in pain now. I know the doctors, the medications, the alternatives & options, the theories, the tests, the pain, frustration & the debilitating shame and humiliation. I’m so grateful I’m not ill now. I’m so grateful that because I was, I can listen to her and really hear her the way she has heard me, shame free. There is no healing in shame, either.
All of life is a lesson I believe, the trick is getting the lesson the first time around. One of my lessons brought the blessing of understanding the shame & loneliness chronic illness can bring, of understanding tired, bone tired. I understand a willingness to die that has nothing to do with clinical depression or being suicidal but just plain being done. My grandma was like that at the end of her life. Just done. Mostly, I learned how important it is to simply be heard, that sometimes the best thing you can do for someone is just listen, really listen.
I’d like to hear about the lessons you got from unexpected places.
It’s so obnoxious when people offer unsolicited advice, or solutions so obvious that they were tried years ago. And you’re right, it’s not about being helpful, it’s about fixing their own discomfort. That’s why it’s best to get people talking about themselves, and then just agree with what they’re saying, meanwhile planning what you’re going to do afterwards.
My Dad is a big fan of clichés. One of his faves is “don’t get bitten by the same dog twice”. I constantly do. I rarely, if ever, learn the lesson. Sometimes, it’s do to memory failure, other times maybe a lack of interest or some time I just flat out don’t care. I learn where it counts, maybe.
And it is difficult when your body fails you, and then your doctors follow suit. What in the hell do you have to do to get a doctor’s “A” game, anyway? I would really like to know. Mostly what I get are indifferent shrugs.
Getting the docs “A” game is a challenge for sure. I’ve switched around when I felt I wasn’t getting the attention I needed.
>Younger doctors, while less experienced, are often more willing to look outside the box for answers, and to defer/refer to specialists.
>Having an “interesting” ailment helps, but it reduces you to an episode of “House”, or at least it did me when mine got complicated. Doctors talked over me, about me but rarely to me.
Either way – you have to be your own advocate and that on a good day is exhausting, when you’re ill it’s unbearable. My friend Lyle used to say “It’s hard to be spiritually fit, when you’re physically ill”. He had a lot of good things to say.