Listening to her describe a recurrent dream in which a test finally uncovers the illness explaining her extreme fatigue, I felt overcome by her sadness. Thirty five years ago, after three years searching for a diagnosis, I was almost joyous to get a diagnosis of multiple sclerosis. It took me a few years of living with the now named disease to see how little this information did for me. My clients tell me I’m not alone.
Why the search for the diagnosis? I think it’s because we have certain assumptions:
1. If my symptoms have a name, people will believe I’m sick and that will make it easier to talk about it. It’s difficult to talk about unpredictable and invisible disease regardless of whether it’s named or not. People don’t question the existence of cancer or heart disease. But my clients — such as the one with severe fatigue from the heart medication that keeps her alive or the one on a 5 year drug regimen course post cancer surgery — will tell you it takes much practice to get the support they need. Those with autoimmune diseases that can be diagnosed by tests (such as rheumatoid arthritis or multiple sclerosis) find the ongoing conversation is tough. (See my booklet, Are You Talking? for challenges and tactics.) And those who live with diagnoses such as CFIDS, Fibromyalgia, chronic pain or even a sleep disorder, diagnosis not based on objective findings, get raised eyebrows and unasked for opinions when they bring up their health challenges.
2. If there is a medical diagnosis, then I can get treatment so I will feel better. Even with a disease with treatment options, finding the right one can be a windy and torturous path. Ten years after MS diagnosis, when I was diagnosed with ulcerative colitis, my neurologist said, “At least this disease is treatable.” But what happens when the drug therapy options don’t work, as in my case? I hear how the search for effective medication takes a physical, emotional and financial toll. The bottom line is that there are too many diseases and medical conditions with names but few effective treatment options.
3. A diagnosis with treatment will lead to a cure that gives me back my life. Chronic (defined as habitual and a long time) is always with you, even if it’s quiet for a while. Illness is lousy (there are other adjectives I’d use but I don’t want to offend anyone) and no matter what spin you put on it, life is less fun with it. Chronic Illness means that your body is unreliable and a source of difficulty.
I suggest that when medical appointments become your full time job and you’re only running into solid brick walls, it’s time to put the search for the holy grail, the diagnosis, aside. What would it be like if you put all that energy and attention into focusing on what you can do to manage the symptoms and get on with your life? I know it’s not an easy shift. But I’ve seen that with help and hope, it is possible