Like many people with chronic illnesses, just getting to a diagnosis was a major challenge for me.
In fact, it took a year-and-a-half of fruitless doctor visits before I ended up in the ER in heart failure. That’s when an astute pulmonologist finally diagnosed me with eosinophilic granulomatosis with polyangiitis (EGPA, although better known as Churg-Strauss vasculitis at the time of diagnosis) at the age of 29.
It is one of those odd “lottery” diseases, in that your chances of winning the lottery are probably better than being diagnosed with it. In fact, most doctors had never heard of it, and even my rheumatologist had never encountered a patient with the diagnosis until I came along. It is rare enough to have been one of the mysterious illnesses spotlighted on the television show “House,” which I happened to see late one night while sitting in the ICU shortly after my diagnosis. At the time, the Internet was not a friend, as much of the information available was either out of date or straight-up incorrect. I could tell by the looks on my mother’s and my young wife’s faces… it was a scary, horrible, terrible disease.
Still, more than a decade later, my heart healed and I’ve been able to live a relatively normal healthy life, and have since been blessed with two incredible, wonderful children.
That said, the often overlooked scars of chronic illness are psychological, not physical.
These are six ways illness has effected me psychologically, and how I’ve come to terms with the mental scars that run deeper than the actual scars.
When you have a chronic illness (especially one that threatens your life), there is not a moment in your day, whether awake or asleep, that you forget it. I am hyper vigilant about my body. I feel every odd tinge, cramp, and palpitation, and every time I can’t quite catch my breath or can’t seem to get that yawn out. In reality, it is probably more appropriate to define it as post-traumatic stress disorder (PTSD), as it most certainly is a response to the trauma I went through, but it manifests as anxiety (and sometimes depression). I’d battled my anxiety for the first eight or nine years, until it started to win. I had a breakdown and sought treatment via therapy and anti-depressants. Like many, I was fearful of medicating, but having come out on the other side I am so grateful to those medications. When used correctly, they truly can be lifesavers.
Loss and grief.
Never once has a doctor sat me down and discussed a prognosis, even when I was very near death. The fact is that it may shorten my life — or it may not. Nevertheless, the prospect of death looms with a sense of loss and grief for what might have been. It admittedly makes me hesitant to take certain risks, such as pursuing a new job or buying a new home. I also realize that there are certain activities I can’t share with my kids. Between my asthma and my lingering neuropathy, I’m not a dad that can chase them around the yard for hours at a time, and sometimes I am just too tired to play a simple board game.
An odd element of chronic illness is the profound sense of failure you feel when you flare. A few years back, I changed rheumatologists because mine made me feel like a failure every time I went in for a follow-up and hadn’t been able to lower my prednisone to a level he wanted. I suffered because I had a rare disease and he had unrealistic expectations for my treatment; the great likelihood is that I am never going to get off prednisone, unless they find a cure (which is unlikely in my lifetime). He didn’t understand how horrible it made me feel to be judged on how my body responded. Every time I stepped in his office, my blood pressure spiked and my anxiety would skyrocket, and it would take days for me to recover.
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I take a lot of medications and I am so thankful for them – they keep me alive. But there are side effects that impact my well-being. Prednisone, my life-saving miracle, can also ravage my body. I’m fortunate because I metabolize it very well and so have never ballooned as a result, but I absolutely do gain some weight and develop “moon face” when I spike my dose. It also plays with your emotions. When I was recovering, CVS commercials would make me cry. I don’t always feel great at those times, but I never forget the alternative is death. I see others on the EGPA Facebook group waffle on when to spike their medications if they begin to flare. Perhaps they were diagnosed early and never experienced what I did, but I never have that debate. I learned through trial and error what works, and I realized that acting early is better than waiting till I’m in full flare. For better or worse, prednisone is my friend.
Empathy and preparedness.
The psychological impacts of chronic illness are not all bad. I feel I am a better father and husband than I may have been if not for the empathy and perspective I have gained from my disease. I am also keenly focused on ensuring I leave my family prepared should I lose this fight prematurely; as such, I save a lot, max out my 401(k), pay down the mortgage and any debt, and get as much life insurance as possible (which unfortunately is limited to group life benefits through my work since I cannot pass medical underwriting). I need peace of mind knowing that my family will be take care of… no matter what.
My grandfather once told me a story about a chamber of commerce meeting he attended as a young man. He sat talking to a couple of gentlemen, including an elderly physician. One of the men asked the doctor, “What is the key to a long and fruitful life?” Without a moment’s pause, the doctor answered plainly: “Be diagnosed with a chronic illness.”
His rationale was simple – when you realize your health is fragile and at risk, you care for yourself better. I know this to be true. While the hyper vigilance inflates my anxiety, it also ensures I pay attention to my body. I take my medications as prescribed. I make sure I get sufficient rest. I get my flu shot and slather on hand sanitizer every time I return to my car after touching a grocery cart or gas pump. I find balance in my work and personal life. And I don’t take unnecessary risks. I’ve been close enough to death that I have absolutely no interest in jumping from airplanes or climbing big mountains. I don’t drink and don’t smoke and try to eat well and exercise (sometimes more consistently than others). Aside from my chronic illness, I am probably one of the healthier folks I know.
So when the mental scars seem to linger, remember it’s OK. While chronic illness can take a lot from you, it can also give you so much in return.