Living with Autoimmune Disease: Don’t Let a Chronic Illness Rule Your Life
It seems to me that chronic illnesses are like snowflakes; no two of them are alike. Unlike snowflakes which melt, these diseases tend to hang on tenaciously like an annoying mother-in-law that makes you miserable.
This is something I’ve been familiar with for the last 37 years.
When I was 15 years old, the joints in my hands grew painful, swollen and stiff. My knees were in the same trouble. I went from being a busy, active teen to hobbling around within a few short months.
Doctors did blood test after blood test, to no avail. I spent more time in the doctor’s office than I did in school. Since my blood tests never turned up any disease, my doctors felt that I had a form of arthritis that was largely psychosomatic. Nevertheless, these same doctors put me on a heavy regimen of non-steroidal anti-inflammatory drugs to stem the ever-worsening pain.
Doctor after doctor recited this mantra until a special blood test was developed in the mid-1980’s that focused on antinuclear antibodies or ANAs. It turned out that my ANA count was more than 12 times normal.
Now I was diagnosed with a rare form of rheumatoid arthritis. It was such a relief to have some idea of what disease I was suffering from. I was put on even stronger NSAIDs in what turned out to be a vain effort to stop the disease from worsening.
By the time I was 27, I was in unrelenting pain 24 hours a day. Suicide was beginning to look like an attractive idea and I seriously considered purchasing a gun.
My doctor and I had run out of options, except one. He put me on Prednisone. The disease finally hit a wall, and the Prednisone relieved the constant pain and my despair.
I remained free of symptoms for nearly a decade, until I took a job as a counselor for developmentally disabled boys. The demands of the job drove my health over the edge.
However, I was fortunate because in that decade, more sophisticated blood tests had been developed.
I was diagnosed with Mixed Connective Tissue Disease, a rare disorder. Turns out I didn’t have rheumatoid arthritis after all. MCTD had managed to completely shut down my thyroid gland, and this was what was causing the pain to return. I was put on a regimen of Celebrex and thyroid pills.
I can go on and off of the Celebrex as pain and my illness dictate, but I have to remain on thyroid medication for the rest of my life.
Being diagnosed with any kind of illness is likely to be life-changing and challenging for you, your family, and your friends, but with time you can learn to cope with it.
I’m going to share some tips I’ve learned along the way.
Allow yourself the luxury of time. If you’re planning to entertain, start days in advance. Learn to love your freezer and cook that meal well ahead of time. This way you can spiff up your house at your leisure.
One of the most difficult cooking-related chores for me has been grating cheese or vegetables. Yes, purchasing these items already grated is costlier, but it’s worth it in the long run because you’ll be less likely to have to deal with pain while trying to enjoy your company.
Remember that it is alright to say “no,” if you’re not up to doing something. Over the years I’d constantly feel guilty if I wasn’t well enough to go to the movies or to the mall with friends. So, I’d push myself and go. Then I’d either suffer in pain for days or get sick because my exhausted and stressed immune system couldn’t fight off illness. After getting sick a number of times, I finally worked up the courage to say no. If you have friends who are bothered by this, perhaps it’s time to look for new friends.
Don’t expect your family and friends to understand everything you are going through. They won’t be able to. They are not mind-readers. Suffering in silence may seem noble, but it’s a sure-fire way to confuse your loved ones. Talk things over with your husband when you aren’t feeling well, so that he’ll understand when you pop the TV dinners in the microwave instead of preparing that elaborate meal you’d planned the day before. When he helps you, make him feel appreciated. He’ll be more likely to continue helping if you do.
Realize that having a chronic disease isn’t always a bad thing. If I’ve had a run of several days in pain, I definitely love the days that are pain-free. It’s like waking up to bright sunlight after a week of heavy downpours.
Here are more tips on coping with a chronic illness.
