One of the most infuriating days in my life was when a cousin told me that my husband's Ankylosing Spondylitis didn't need any of the treatments he'd been given. Why? Because she searched it on the internet and found out about this rock star who had it. And he toured the world with AS and never took any pain medication.
Sound familiar? How about Phil Mickelson, the professional golfer who was recently diagnosed with Psoriatic Arthritis. He's not worried about it! He's on Enbrel and life is great! So why am I worried about my hands?
My gripe - when famous people are diagnosed with autoimmune disorders and manage to live seemingly normal lives, it makes the general population think that this is the way we all live. Us "regular folk" don't have the resources that people like Phil Mickelson has. I can't go to the Mayo Clinic to get treatment for PsA. My insurance covers a total of 40 physical and/or occupational therapy sessions per year. It covers a total of 30 acupuncture sessions. It does not cover massage therapy.
I know what would be the largest help for Duck's AS - massage and physical therapy. Too bad we can't afford for him to have a daily massage in the morning and a daily work-out session with someone who can correctly monitor his movement and keep him from hurting himself. I bet that famous rock star my cousin mentioned had his own massage therapist and personal trainer on tour with him.
When celebrities have a terrible disease and are healed, the general population assumes this is how it will work for everyone with the same diagnosis. How can we remind the world that we don't all have access to the same level of care? That we don't all have the same level of disability? It's not the fault of the celebrities... they have access to the best, of course they take advantage. If I could do that, I would too!
What we need is an army of everyday folk, telling the world about their personal experience. We need to remind people that not every case is the same. Just because you heard of someone who was "cured" (that's a whole new issue) doesn't mean that I can be.
Please respect me, my treatment, and my level of functioning.
Please trust my rheumatologist and care team to make decisions with me. Don't tell me how to fix it because you heard of one person who was cured. Offer support, offer ideas, but don't tell me that your idea is the only right course. I've probably heard it. I've probably tried it. I will try to be nice if you remember that this is my daily life and I've done more research that you probably can imagine.
Halleluyah! I feel your pain, literally. THANK YOU FOR THIS POST!!
ReplyDeleteI LOVE LOVE LOVE THIS:
"Please respect me, my treatment, and my level of functioning."
You have no idea how many times I hear the same thing about EDs. Oh, you have that? But Portia Del Rossi had it, and she married Ellen, and then she was fine. Maybe you should just go back to women? Oh? But wait, Didn't Felicity Huffman have that? ISn't she like, a super marathoner now? So like, just exercise or something.
ITS SO UNREALISTIC, and it pisses me off.
@DeepSeaMuse I am so glad it resonated with you! Thank you for your heartfelt comments.
ReplyDeleteFantastic post! I can so relate. Acupuncture isn't covered by our insurance, nor is massage therapy. Thanks for spreading awareness!
ReplyDeleteExcellent posts, Lauren! I'm with DeepSeaMuse - your slogan should be the catch phrase of this awareness movement.
ReplyDeletePLEASE RESPECT ME, MY TREATMENT, AND MY LEVEL OF FUNCTIONING.
Well said!
~Jodi Whisenhunt
RA since 1997
@Jodi - I'd LOVE to hear more people chanting just that. Maybe people would realize how marginalized we feel!
ReplyDeleteWorld AIDS Day
ReplyDeleteI agree again. At LEAST with autoimmune disease I can tell people what the heck happened to me. Every day I ache in my heart for the acquired immune deficient (AIDS) patients who are actively treated as lepers and degenerates...
Not that anyone cares, they seem to want to know how to avoid getting as jacked up as me. "Whadya do, get in a car wreck?" I am tempted to say I was attacked by a pack of wolves on the Appalachian trail while hiking--something noble and active and unfortunately exciting to garner sympathy. "I have rheumatoid arthritis" seems to trigger a "what the heck?" and "maybe if you'd exercise."
Again, this time not anonymously, I agree with keeping the unempathetic opinions visible. Not that we with chronic, unremitting pain have not heard it before, no, we hear it EVERY day. It helps to know that I am not the only one unable to dance around a jazz club after consuming every drug big Pharma sells for RA, lupus, and antiphospholipid syndrome.
Hey, I'll get out and exercise when the ortho doc embeds a cup of glass shards and decomposed concrete onto his shoe in-soles, stands & walks for 8 or 10 hours at work treating the impoverished and desperate overseas.
Plus shred the cartilage of his knees into strips that partially protect the unbelievable bone on bone pain of tibia on femur.
Since I've RA, add to the knees, feet, shoulders, elbows, neck, wrists and hands. Every day. Every movement. Glass shards and gravel...
I say try it for a day doc, just to get a taste of being unable to escape the torment-- and field the countless questions about your staggering gait and your twisted countenance.
Then, clean out your shoes, bind your wounds, and thank whatever god you serve that you've been blessed with a hearty constitution.
@Rainwater - your passion is beautiful. Thank you for your support.
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