A Patient's Perspective
The Relief of Getting a Diagnosis
Am Fam Physician. 2009 Dec 1;80(11):1223.
I was recently diagnosed with common variable immunodeficiency (CVID). When I got the diagnosis, I was happy: “Finally, redemption—I'm not a hypochondriac, my B cells are lazy!” My complaints were always generalized and centered on fatigue. Like so many others in this situation, I was referred to a psychiatrist and prescribed antidepressants. I didn't really understand the full scope of things. I wish the doctors had spent more time explaining that Prozac wasn't a magic pill and that I needed to make some lifestyle changes. I also wish the doctors had followed up to make sure it wasn't anything physiological.
The psychiatric medication never worked. I took everything out there, and all of it made me horribly sick. That period was awful. It hurt my relationships. I quit my master's degree program. I was betting it all on a magic pill, and I started ignoring basic things like getting a job I could manage, going for walks, and even eating properly. My worldview changed.
Up until two years ago, no doctor had ever asked me what I thought was wrong. I'll never forget the day when my new doctor asked me, “What do you think is going on?” She didn't flinch when I used some of the medical terminology I'd learned on the Internet. Like so many chronically ill patients, I didn't go to medical school, but I've spent a long time reading up on different conditions. She also took what I said seriously.
Neither of us gave up. She eventually ordered a celiac disease test, which caught the low immunoglobulin A level that led to the diagnosis of CVID.
Now I have this diagnosis, and it's tough because it's another “mystery disease.” When will I get better and how much better will I get? Nobody knows. I just keep telling myself, three months. When three months pass, I just give it three more months. I scrutinize everything, every little detail of my disease. But for some reason, the three-month rule is something that has worked for me.—g.e.
This patient had a number of vague symptoms, making it plausible that an underlying psychiatric diagnosis was the culprit. However, there were a few symptoms, such as persistent diarrhea and intolerance to certain foods, that made me pursue the diagnosis of celiac disease, ultimately uncovering the CVID. Although this diagnosis does not fully explain all of his symptoms, the idea of a disease that can explain at least some of his symptoms is a relief in itself.
SUMI SEXTON, MD, and ROBERT LOFLIN III, MS
Park MA, Li JT, Hagan JB, Maddox DE, Abraham RS. Common variable immunodeficiency: a new look at an old disease. Lancet. 2008;372(9637):489–502.
Smith RC, Lein C, Collins C, et al. Treating patients with medically unexplained symptoms in primary care. J Gen Intern Med. 2003;18(6):478–489.
Immune Deficiency Foundation (http://www.primaryimmune.org). Provides support and education for families affected by immunodeficiency; provides newsletter, handbook, videotape, and educational materials for public and medical professionals; and networks patients and family members affected by immunodeficiency.
Daily Strength. Common variable immunodeficiency support group (http://dailystrength.org/c/Common_Variable_Immunodeficiency/forum/522723-articles-cvid).
YouTube video: “The Beginning Journey of CVID” (http://www.youtube.com/watch?v=rO9AZI4pRmE).
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