Over the weekend, I was getting my butt kicked by pain from both the polycystic ovarian syndrome (PCOS) and psoriasis. At one point, I had a hypomanic night (from my bipolar 2) where I couldn’t sleep until 4 am. Then, of course there are the daily aches and pains from myasthenia gravis, MG, that I’ve had for the past seven years. I missed a holiday party I wanted to attend but I managed to read an engaging book while in bed and write six Hannukah and Christmas cards. I find that focusing on others makes it a little easier. There was a time when I only had one disease. I have lived with bipolar disorder my whole life, and was diagnosed at the age of 18 (you can see more about my diagnosis in my TEDx Talk here). I remember a turning point in college when one of my teammates (whose dad has bipolar disorder) told me I had to sleep on time. He was referring to the decisions I could control (not the occasional hypomanic insomnia, which became less frequent due to prescribed medications)–not doing things like staying up late intentionally. He told me that having bipolar disorder was a full-time job and I needed to stay on my toes. That was excellent advice! I listened to him. But these days, it’s harder to apply. Having one illness–any illness-to be sure, can be lonely and challenging. (I don’t want to diminish anyone’s struggle.) But when you have multiple illnesses (in my case, five), it is a life of constant chaos. You can make progress in one illness only to regress in another illness; it’s like plugging one hole only to find another hole is leaking. People often ask me what it’s like to live with five diseases. So I thought I’d write about this and the issue of comorbidity: having multiple diseases simultaneously.
5 Realities of Living With Multiple Diseases
- You Face Tough Dilemmas: You can do something that helps one disease but is bad for another disease. For example, with bipolar disorder, I need a regimented schedule: Waking up at the same time everyday, doing light therapy in the morning, and going to bed at the same time every night. But ever since I got myasthenia that is more difficult because of daily fatigue and pain. Sometimes, I just need a nap in the daytime–I try to time it so it’s not that long. But when you have chronic fatigue, you can still feel tired after a 5-hour nap or napping a whole day! So each time I nap, I make a decision: If I sleep now, will I be hypomanic tonight? Not getting sleep is followed by depression. There are no easy solutions to this problem. When I’m going through a flare-up (such as the polycystic ovarian syndrome), I call my therapist. Sometimes, I play really loud music during the daytime so I don’t fall asleep. (I’ll take any suggestions for loud music, by the way.)
- You Have Multiple Full-Time Jobs: Everyone’s been in a situation where a coworker was laid off or fired and not replaced. So you ended up doing the job of two people and usually not getting a raise. That’s what I feel like: I’m doing the job of three people. Of course, there is no salary. If anything, I’m losing money. I resumed physical therapy last month after successfully finishing it last year. My PT doesn’t accept insurance but they know myasthenia gravis (which is a rare disease) well.
- You Feel Isolated: I have plenty of friends with bipolar disorder; in a few cases, we were friends for years before either of us were diagnosed. And thanks to Facebook, I have met so many wonderful people with MG. But I don’t have any friends who have both. Sometimes, I think if I met someone with bipolar, PCOS, and MG, we’d be best friends. And then, I think, Why on earth would I want someone else to live with all these diseases?
- You Keep Finding Dead-ends: So many times I have been told by medical professionals that I am a medical anomaly; I’m grateful now to have a neurologist who is empathetic. Sometimes, people stop trying. And I know many people with multiple diseases who have also been told their cases were “virtually unprecedented.” Fashionably ill readers helped a young woman, Lauryn, celebrate her birthday in the hospital (thank you!) by sending cards, balloons, and flowers. She has myasthenia gravis and Cerebral Palsy; her family has been on an endless search to find someone who has both of those diseases.
- You’re Fighting a Rigged Fight: Like millions of people, I watched “The Super Fight” on May 2nd between undefeated Floyd Mayweather and Manny Pacquiao, the only fighter in history to win titles in eight different weight classes despite being 5’6. We now know from the detailed report by renowned boxing journalist Thomas Hauser that Floyd was allowed to use banned IVs, which are used to hide steroids and other banned substances. Translation: Floyd was allowed to cheat. By contrast, Pacquiao who had an injured right shoulder was denied the (very legal) medication, Toradol. People can argue about what-ifs. But the fact remains that this was not an even fight…unless you think rules are irrelevant. Competitors who are confident in their abilities do not need to lie and circumvent rules. This August, I experienced a major flare-up of the PCOS, which in turn triggered a terrible episode of the MG in September. This flare-up resulted in my neurologist increasing my Prednisone from 4 to 10 mg overnight and a trip to the ER. I struggled with depression in October while still fighting the MG and tremors returned because of the MG flare-up. This in turn resulted in me resuming physical therapy. I now realize that I’m fighting a rigged fight: I’ve got one arm tied behind my back while multiple opponents are hitting me at the same time. Is it fair for Rocky to fight Apollo Creed, Ivan Drago, and Clubber Lang simultaneously? There have been times when I’ve thought, I’m not sure if I have the stamina to do another round with MG or another day with PCOS, etc. But now, I realize, none of these diseases (even the MG which almost killed me in 2008) has what it takes to go toe-to-toe with me in an even fight. That’s why they need to conspire and cheat because they’re not strong enough for me! (I should note that I could not fight this fight without God, family, and friends.) But, I take pride in knowing that MG and my other diseases need to cheat to beat me. I am stronger than I realized. And when the days are long and there is no end in sight, I hope you realize how strong you are.
–Your Stylist, Jessica Gimeno
(P.S. Everyone should go watch Creed, the sixth Rocky sequel, in theaters now!)