Take Stock of Where You Are Now
In your journal, write briefly in response to the following questions. One or two sentences for each will suffice.
1. How easy, or difficult, was your diagnosis process?
2. For how long did you experience symptoms before you started getting answers?
3. What was it like for you when you were waiting for a diagnosis? What thoughts did you have?
4. How did you feel when you finally had a diagnosis?
5. How did your world change?
6. How do you feel, now, when you think back to that time?
The Wonderful Pieces of Divinity I Have Found
Humor is your friend.
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Appreciate the little things.
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Sometimes your mood comes down to a choice.
Do you want to be happy or sad today?
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People help you as a way of showing love when they feel helpless against your disease.
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You may not control your disease, but you control how you think and feel about it.
Therefore, you control your experience.
My road to autoimmunity is probably similar to yours or your loved one’s. I had countless environmental sensitivities as a child. Temperature changes, humidity, and barometric pressure changes affected me, as did chemicals in shampoos and detergents—even fabrics. I had respiratory infections, strange rashes, and excruciating muscle pains. I also found myself to be fairly clumsy. Aside from all those pesky inconveniences, I was a normal, physically active, energetic kid, full of life and zest for adventure. Does this sound familiar?
We had traces of autoimmunity in our family—a bit of arthritis and psoriasis—and there were various forms of cancer, but nothing so unusual as to indicate we were at higher risk than the general population.
In my second year of college, I contracted mononucleosis. Prior to being diagnosed, I was put on antibiotics, which triggered an allergic reaction that caused an all-over-body-rash the likes of which few have ever seen.
This event, the raging mononucleosis, was the final catalyst that took me from having an overly sensitive body, which made me a candidate for problems, to someone whose immune system went undeniably haywire. My immune system forgot what it was supposed to do (protect the body from germs) and went on the offensive (attacking itself) instead.
Over the next eight years, I saw numerous doctors and had many tests and various diagnoses before we settled on what they believed was the correct single diagnosis: juvenile-onset dermatomyositis.
The snippets of information I received from the pre-diagnosis doctors were big words like lupus, multiple sclerosis, muscular dystrophy, and cancer. During that time I was alternately called delusional, a hypochondriac, a liar, and an insomniac, or they said that I had only fibromyalgia—just to name a few. In the years since, and as understanding has increased, the qualifier “only” has been removed from any mention of fibromyalgia.
Have They Given You Meds, Meds, and More Meds?
I felt like a guinea pig being put on medicine after medicine to treat, or rather diagnose, the symptoms of the disease. More meds were needed to treat the side effects of the initial meds, and still more to treat the side effects of those. I saw some wonderful doctors as well as many others who clearly should have chosen a different career.
As a child I knew a woman who died in childbirth from undiagnosed lupus, so I was scared out of my wits. The prognosis for someone with lupus wasn’t good, yet I didn’t feel like I was supposed to die. The doctor my parents took me to said he wasn’t sure what was wrong with me. Possibly it could resolve itself and turn out to be minor. In any case, he wasn’t going to diagnose me because of my age.
This was hard to digest. Was it that I wasn’t ill enough to warrant a diagnosis? Or that it wasn’t clear? Was it just his way of saying he didn’t know? My stepdad would helpfully point out that the lack of definitive answers from doctors is the reason they are said to be practicing medicine.
I spent much of my twenties feeling like my head was halfway in the guillotine, waiting to be shoved all the way in so that someone could deliver my death sentence and lower the big boom.
In teaching hospitals I was poked and prodded by thirty-plus medical students who said things like, “Wow, that rash is really cool!” Never mind I was a human being, in pain, scared out of my mind, and wishing I could be anywhere but here, and have clear skin without a painful, oozing rash (a major indicator that whatever my ailment, it was in full form). Could it be fatal? Thanks so much, dear, young medical student, for telling me how cool this rash is.
Instead of saying that I just smiled and listened—and then cried when I got to my car. If you’ve ever visited a teaching hospital, you may have experienced the same sort of insensitivity. Did you find it hard to remember that they were young and immature and didn’t mean to dehumanize you? I did.
I had full-fledged doctors who, by the way, didn’t have my disease, tell me to buck up and get over it; it wasn’t that painful. How could they possibly know? They implied I was exaggerating when I said I couldn’t walk up a flight of stairs; maybe it was all depression and that I should stop looking for an excuse to be sad; or there were people much sicker than me and that I should be grateful I didn’t have a terminal disease like the person they saw in the last room.
Why did people who didn’t live my life feel they had the right to tell me how I should or should not be feeling, or how much pain I should or should not be experiencing? I wondered why these people had gone to medical school if they already thought they knew everything.
Raw Emotions During Your “Limbo” Time
If you remember the emotions you felt while going through your “limbo” time—the time before diagnosis—know you are in good company. Many, perhaps most, autoimmunity patients go through years of misdiagnoses before getting the correct one. It’s upsetting, frustrating, and scary.
What a relief it was to finally have an actual diagnosis. I wondered if it meant I was glad to be sick, but I realized it wasn’t. I was just happy to have answers so I could finally move forward.
Before and immediately after the diagnosis, my life changed dramatically. My education and jobs were affected. I was fortunate to have some understanding bosses who allowed me flexible hours, or coworkers who picked up the slack when I was exhausted. When I knew I was getting close to using up sick days, I would look for a new job; this usually happened around the six-month mark. Repeatedly.
My resume from the first couple of years after college looks a bit like hopscotch.