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.