I know I’m guilty of it too, so let me start out by saying that I think this is just human nature and it doesn’t mean what it feels like it means when you are on the receiving end.
People hear (read, whatever) a comment you make about… seeing a Rheumatologist… or taking Methotrexate… or… whatever… and suddenly they get “that look” and they make “that comment”… oh, I hope you don’t have Rheumatoid Arthritis.
Of all the things I could have, I have to admit, RA wasn’t at the top of my list. I probably would have picked something that sounded sexier, or that more people understood or could relate to, or that wouldn’t ever change the angles at which my fingers or toes pointed. But I didn’t actually get a vote. And frankly I don’t think I suck that bad at carrying on my life. It could have been better, but it could have been worse.
I understand that people feel empatheticly bad that I have a forever condition that frequently hurts and that sometimes can knock the shit out of me and that might shorten my life and that (outside chance) could wind me up on disability some day.
It does suck that it hurts. It way sucks that it makes me tired a lot. Combine those two and it makes some days be way cranky days.
But don’t for one minute forget the fact that I do not let it get in my way. When I’m not controlled, it has a huge impact on every day. But I’m back to being controlled. I’m back to taking Yoga (and starting to train for next year’s big races) and thinking about smaller races later this year. I’m enjoying yard work (WITH my work gloves on, thank you very much). I am back to writing for a contract. I’m back to living my life. Yeah, I have to be mindful and not stress too much and not work too much and to take time for myself, but I’m back to being me.
And today, I’m working from home (too many hours, I know… and I’m on pager duty so have to be “on line” till 8pm) with the windows wide open. The birds are singing and the breeze is making my dozen or so wind chimes dance. For a while, I worked from the front porch.
I was reminded this week that, there but for the grace of god go I by a friend I used to work with. She is considering, very seriously planning on, applying to go on disability. She is Sero-negative RA and has been fighting for a diagnosis for two or more years. I understand why she would be thinking this way. There are days that I am terrified of getting to that point. So I fight. I fight every day to stay ahead of my condition. And I write, so other people know that they aren’t alone. And I reach out to educate people, so maybe for some people, “the reaction” is more… Oh… that sucks… I’m sorry… Come on, let’s go have a cup of coffee (tea, ice tea, banana split…whatever).
it could be better. But it could be worse. Be gentle with yourself. Know that there are thousands and thousands of us out here who have heard those words and we are more than willing to help you on your journey