As a starting place, my gut says 'don't talk about it.' Most of the time I work pretty hard at looking pretty darn normal, so it's not like others are going to bring it up. I grew up in a
house where everyone was fine at all times, even when they are not. The theory is 'If they can't do anything to help, why tell them?' it's pretty stoic. That can be pretty isolating. If I wouldn't tell my brother how I am feeling, then how do I tell my friends or even my doctor? That's literally "how" since the language tools aren't developed. Our children are great teachers. As a parent and husband I learned that I want to know what my wife and children are going through at all times, even if I can't do anything about it. So, openings up is a challenge for me that I force myself to do with my immediate family and sometimes close friends. Regarding the language, I think the spoon theory by Christine Miserandino is brilliant (it reminds me of Rick Lavoi's self esteem poker chips).
There some people I need to tell. These are my 'team members'. It could take years before I add someone to my team. I may not even have told them yet that they are on my team. I like to keep a rheumatologist, nutritionist, clergy, psychologist, friend and yoga instructor on my team. I've let a couple of spots go empty... I'll have to work on that before my next flare. If I trust a yoga teacher, then I let them know why after 18 years of practicing yoga, I'm still the 'un-bendy Tin Man’ and there is a reason why my range of motion is so limited.
I end up saying something along the lines of "I have ankylosing spondylitis and have been in constant pain since I was 28. (I've had about 8 pain free days in the past 22 years). Some days & nights are better than others. I'm doing pretty good right now. My best times are usually between 10:30am-4:30pm. It’s an odd medical term that's means inflammation & fusing of the spine. For me, my hips, spine, shoulder, neck, intestines and eyes get inflamed. I have regular intervals of sharp nerve pain in my left leg. Over time the inflammation can fuse joints; so for me, my SI joint fused long ago and my neck is fusing. I have reduced range of motion and get fatigued. It's an old disease, mummies were found with it. It’s cause is unknown, but there are genetic markers and an environmental &/or mechanical trigger. We are looking for a cure. What I don't say out loud "a cure is probably too late for me. Life expectancy is probably reduced a bit from cardio issues or fragile bones or side effects from medications, but I fully expect to live a long and productive life"
Most people don't ask a lot of questions. I'm rarely looking for sympathy. My son is on my team. He usually says “sorry you’re hurting right now”, and that's golden. AS is part of my journey, it's my path. One I would rather not take or wish on anyone. But why curse the ground when you can find meaning in the steps. That reminds me of two waitresses in Working by Studs Terkel, one can't stand serving people, the other waitress makes an art of it. Same path, different interpretation. That's not the same as giving up and accepting your lot because at the same time I'm doing everything in my power to improve. I might as well enjoy the journey. It's possible to struggle miserably in yoga and yet smile throughout practice. I do want others to have an easier time; so if that means I need to talk about SpA, then I will learn to do that.
In the end, non-spondys don't get it. I assume that when I am in the room with 150 people then someone else there probably has AS. But, if spondys have to work so hard on being healthy (posture, diet, exercise, sleep, stress) they're bound to look normal. Since no one voluntarily talks about AS, how do you possibly meet them? Who do you tell your story to? Who can you talk about it with? That's where the SAA Forums, Faces of AS and especially the education/support group comes in. People drive hours every month just to meet and talk to others with spondyloarthritis (SpA). I've had people take a three hour bus to come to a meeting. That’s a person enduring a lot of pain just sitting on a bus for a few minutes. I've had a guy from England join us while he was on a business trip. A women from Wyoming is coming next month. She can’t find a good AS doc in Wyoming, so she’s coming out here. We talk about meds, reactions to meds, fatigue, work, exercise, genetics, symptoms, insurance, diet, etc. We also talked about bed mattresses.
#spondylitis
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