I have spent most of the past 11 years in a medical nightmare, bouncing from doctor to doctor, receiving misdiagnosis after misdiagnosis. In the summer of 2014, my health finally forced me to give up my part-time job as a certified public accountant (CPA) to become a full-time patient. I was finally diagnosed with a rare genetic disorder in January 2014.
Needless to say, this has not been all sunshine and roses. However, I have survived, and somehow, I have even managed to thrive. Chronic, rare disease? Well, I can’t make it go away, but I can try and make the best of it. Whenever I am having a bad day (or week, or even month), I try to remind myself of the positives. I have always been determined to do my best at whatever I do, so I am going to rock this chronic illness thing!
The ways I rock my chronic illness:
1. I never have to fake being sick to get out of doing things. I fake being well when I can.
2. A Netflix binge is often just what the doctor ordered.
3. My last hospitalist received continuing education credit for researching my disease before coming to my room.
4. I am single-handedly keeping two pharmacists employed and contributing to several doctors’ children’s private school tuition.
5. I have a medical reason for being overweight and my GI doctor expressly forbade me from doing crunches or sit-ups.
6. Because I am a jokester and a prankster, my doctors and nurses always smile and laugh when they see me. If I am not jovial, they immediately go into “crisis mode.”
7. My disease and status as a clinical study patient at the National Institutes of Health (NIH) make me fascinating and generally get me VIP treatment with new doctors.
8. My doctors discuss me when they see one another outside the office. Everyone knows my name. “Cynthia-itis” is a joking way to describe a patient who has “every negative reaction possible to a medication.”
9. I gave up Ann Taylor and heels for dressy yoga pants and comfy yoga pants.
10. If I wear makeup now, people feel I have made an extra effort.
11. Doing the majority of my shopping on Amazon is a medical necessity.
12. Facebook keeps me socially connected and sane and is therefore a requirement.
13. Doing the laundry counts as cardio.
14. Throwing meat and a few cans of veggies in the Crockpot garners kudos for cooking dinner.
15. When people ask what I have, I no longer have to listen to horror stories of their distant relatives who have a much worse case of it — blank stares can be preferable!
16. If I say what I have really fast, most people are too dumbfounded to respond — autoimmune-polyendocrine-candidiasis-ectodermal dystrophy. Silence is golden!
17. Nobody expects my house to be clean.
18. People have low expectations of me. I almost always meet them.
Now, would I give all of this fabulousness up to be healthy? In a second!
But since that isn’t going to happen, I figure it can’t hurt to at least try to find a silver lining in all of this. Chronic illness sucks. It can suck the life right out of you… literally. I spent many years absolutely miserable. I was 34 when I was finally correctly diagnosed with a genetic disorder. I’m done with living in a dark, miserable, lonely hole.
I am chronically cranky, but I am living and laughing!
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She is a 30-something inactive CPA. She has a very rare genetic disorder called autoimmune-polyendocrine-candidiasis-ectodermal dystrophy. She lives in Mississippi with her husband, daughter, dog (Biscuit), and two cats (Snickers and Butterfinger).
cynthia-alberson