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How I Keep My Incurable Illness From Ruling My Life

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When I was diagnosed with pulmonary hypertension,  a chronic, rare and incurable illness, my life didn’t end. For some, it’s a dreaded diagnosis and trust me, it was for me, too. But, when diagnosed with such a disease, it doesn’t have to be the end. Sure, life as I knew it ended, but it didn’t mean I had to stop doing the things I had enjoyed doing prior to my diagnosis. It meant doing them with modifications and adjustments. It meant packing extra medication and supplies. It meant taking my time and resting more frequently.

I could have taken on a different attitude but that would have been, in my opinion, a detriment to my health. I could have rolled up in a ball, cried, felt sorry for myself, felt woeful and shouted those famous two words: “Why me?” But, I didn’t. My disease is what it is and it happened to me just as it could have happened to anyone else. By rolling up in a ball, I would have missed out on so many things I still can do in spite of my illness. Yes, I’ve shed my fair share of tears and I’ve felt sad when I’ve gotten those hard days, where my body can do nothing other than sit or sleep, or when I have trouble breathing. There are also days when I’m mad and when I momentarily think life sucks. I know it’s not all rainbows and lollipops. I do feel sorry for myself at times and that’s because I’m human. I also still have moments of anger, anxiety and depression but I can’t let those dictate my life and what time I have left. Those hard days, though, people will seldom see. My Facebook and Instagram friends are scarcely privy to the “real” illness. There are times when I give them access into my world, but that’s more for educational purposes, not for them to feel bad or sorry or sad for me.

I’ve heard from others who are chronically ill: “I can’t do this now that I’m sick.” Understandably there are limitations, but I think everything is possible. I can choose to let the illness rule my life or I can rule my illness, which is what I choose to do if I’m going to enjoy the rest of my life. I am on a continuous IV medication, 24/7. Do I still travel? Yes. Do I still go camping? Yes. Do I still go to concerts? Yes. Do I still go out for dinner? Yes. Everything I do requires a little extra planning, but I refuse to eliminate the things I loved doing from my life just because I have a chronic illness.

I don’t mourn for a life that’s lost because I don’t think it’s lost. It’s just a different life now and you have to make the most of that new life. I taught sixth grade when I was diagnosed and had to stop teaching and leave a career I loved after 12 years. I could be sad about that, or I could embrace what I have now, which is: quality time at home with my family, time to focus on my health, lots of time to rest, going guilt-free to many medical appointments (if I were working, I’d feel tremendous guilt for all the time off needed), finding new hobbies and, my favorite, catching up on daytime TV. It’s just a new life now… an unexpected fork in the road. It’s not a dead-end, however, so I think the new path should be welcomed and celebrated. Whether I had a disease or not, I believe I would have met an unexpected fork in that road anyway.

We are here on this earth for such a short time, whether we are healthy or not. We can spend our unhealthy days dreaming of healthier days, or we can spend those days enjoying what we have and what we can do while we can. Sure, it’s easier said than done, but I would like to think that those who can embrace their new life will only benefit in the long run.

Originally published: November 11, 2016
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