As a weggie – one of those people fated to live with Wegener’s granulomatosis (AKA GPA) for the rest of my life – I’ve had well-meaning people try to offer strategies and advice on how to deal with chronic illness. Yesterday, I came across this item posted on Facebook by a fellow weggie, Anne Wellings.

Spoon theory is something new to me. I understand it on some organic level, having experienced an illness that sometimes left me exhausted but not visibly sick, of being at an age where everyone else in my cohort can name an ache or pain for every one I experience, though theirs more likely than not aren’t signs of a body rejecting itself…. The “Chronic Illness BINGO” chart below covers a lot of the things others either said to me or implied in their effort to “deal” with my illness.

My all-time favorite, though, was by a co-worker, who sold organic vitamins for extra money. (“One-A-Day vitamins don’t break down in your system, so you just poop them out whole” is a paraphrase of one line she used.) Shortly after I returned to work in March 2004, after three months off for the fight of my life, for my life, then a few weeks to build up my strength, she told me I should stop taking the medications my doctor prescribed because they were poison, which is technically true of medicines — and, well, vitamins! Instead, I should take such-and-such vitamins because she, vitamin seller, read a study that characterized natural vitamins of the specific sort she sold as a panacea…for everything, including this disease I had that she’d never heard about before I came down with it.

I told her I could take her vitamins, a therapy not recognized by any credible WG specialists and die or continue with the “poison” prescribed by my doctor and live. Was she willing to take responsibility if I died on her vitamins? It shut her up.

She also tried to convince another co-worker with MS of the efficacy of her vitamins. The person with MS told her off, too.

Though I am in remission, and have been since May 2005, I remember well-meaning people trying to help me deal with something they couldn’t possibly grasp, a rare illness that has no cure, and, that used to be a sure death sentence. My own doctor, when he identified my illness and told me what I had, said I had Wegener’s granulomatosis, and would be dead within two years.

That was in December 2003. In December 2006, on the third anniversary of the “dead in two years” prognosis, I reminded him about what he said that cold day in 2003. “That’s the blunt kind of thing I’d say,” he said. And how! But I appreciated his candor at each stage of my treatment. He is a compassionate fellow under that hard veneer, something I came to realize.

What do you say to someone dealing with a chronic illness? That depends on the person. I personally have no issues with death. I kissed it on the lips in December 2003-January 2004, and it was cold. Just don’t try to out-guess my doctors unless you have credentials that establish you as a bonafide WG/GPA specialist.

Then I got better, achieved a new normal, but I am aware of the dangers I face. Keep your germy little children away from me when they are sick, for example…! And don’t visit me with a cold. I am susceptible to respiratory illnesses.  Your cold that is over for you in a week becomes something I might fight over two months, sometimes through bed rest. I know to wash my hands, a lot!

http://vasculitisfoundation.org/