I try to stay as positive as possible. With that said, positivity is something I have to actively strive for everyday. It does not come easy, or cheap when you’re fighting chronic illness, and on chemotherapy for life. I wake up in pain every morning, and go to bed in pain every night. There is not a day that passes pain free. With my luck, my chronic autoimmune disorder is rare, has no known cure, is difficult to treat, is linked to my vascular system (so it can go wreak havoc anywhere in my body), and is heavily exacerbated stress.
Welcome to Behçet’s Disease. It’s quite a lonely party, as there are only about 16 to 20 thousand cases in the US, and only one specific treatment center that most of us could never afford to visit. Milder cases, as I was when first diagnosed, can often be treated with just immune suppression. However, if patients are not able to “clear the deck,” and eliminate excessive stress in life, the disease becomes much more aggressive.
Symptoms of Behçet’s include oral, skin, and genital ulcers that often cause severe scarring, and can take months to heal. It can cause eye lesions (Anterior/Posterior Uveitis, and Iritis) that can lead to total blindness. Behçet’s also comes with all, or many of the same symptoms as RA (Rheumatoid Arthritis), Crohn’s Disease, MS (Multiple Sclerosis), and Lupus. Such mimicry can mean years of observation to reach the correct diagnosis, or have any success at treatment.
The average age of death for patients with Behçet’s Disease is 34.8 +/- 11.9 years old (Saadoun, et. al, 2010). I am 36 right now, so I have a maximum life expectancy of about 46.7 years old. That’s a tough pill to swallow when you’ve just finally got life together, and have fallen in love with Mr. Right. To say I didn’t plan for this is an extreme understatement.
So here is the question: given those facts, how do you forgive someone who had saw how sick you were, witnessed your death-like state on Methotrexate, and still took advantage of you? Not just a little bit, but did something they knew (and had said themselves) would destroy your family. Something so stressful, that pushed your body past so many limits that your stress triggered illness morphed into a horrific nightmare requiring increasing doses of chemotherapy, and immune suppression.
And what do you do when that person is a family member who refuses to admit the situation had impact, or that they were in any way responsible? I’m still clueless on that one, but I’ve got about ten years left to figure it out. (Far, far less time on this Earth than the one who turned my family upside down.)
Can anyone relate, or do you have helpful advice? Please leave your feedback in the comments section, below.
Saadoun, D., Wechsler, B., Desseaux, K., Le Thi Huong, D., Amoura, Z., Resche-Rigon, M., Cacoub, P. (2010). Mortality in Behçets Disease. Arthritis & Rheumatology, 62(9):2806-12. doi: 10.1002/art.27568.