I remember when I was younger and I felt so carefree. My life was easy-breezy, and full of great times, cool friends, laughter, and a go-with-the-flow attitude. I really didn’t have a worry or a care. I lived a noncommittal, fly-by-the-seat-of-my-pants kind of life. My friends were your average teenage boys and girls who hung out with you only when you had house parties or had money for beer and pizza. To be completely honest none of that stuff really bothered me. I was young, living my life, and had no serious commitments that tied down my freedom.
That all changed drastically when I turned 19 years old. Two months after my 19th birthday I was diagnosed with a rare chronic autoimmune disease. At that time, I couldn’t really tell you how I felt about it because I think I was just in utter shock and disbelief. When I hear the doctor I went to for minor shoulder and wrist pain tell me I had a rare incurable, chronic disease– a disease that doctors didn’t know how people got or how to treat– left me numb and completely overwhelmed. How could this be happening to me? I was in good health. I ate pretty healthy. I exercised three days a week at the gym. I went to my family doctor once a year for a physical. I did everything I was supposed to do to stay healthy. So what went wrong?
After my initial diagnosis I had to have all kinds of tests, blood work, and examination by a bunch of specialists, and the results showed the same thing: I had a chronic autoimmune disease. I was told to go home and given half a dozen prescription to fill at my pharmacy and to make a follow up appointment with a rheumatologist and pulmonologist for three weeks time. The ride home from the doctor’s office that day was deathly silent. You could hear my heart beating in my chest; that’s how quiet it was.
Over the next 17 years my life has been 100% turned upside down,and inside out. Everything I knew to be normal was wiped away and I had to replace it with new ways of living. I found out pretty quickly that I couldn’t just get up and go like I used to. My body literally wouldn’t let me. I had to plan everything I did or anywhere I went ahead of time to make sure I was prepared for any issues I could have along the way.
I could no longer eat anything I wanted. I had to avoid certain foods for digestive reasons and so going out to eat required planning as well. If my friends wanted to call me up and go to the beach in an hour. Guess what? I couldn’t do that anymore. I had to figure out if it was to hot out because I had developed breathing issues. I couldn’t walk long distances, so if I went I needed to be dropped off very close to the area we would be; otherwise, I couldn’t go. If the weather was 50 degrees or below I most likely couldn’t go because I had circulation problems and couldn’t be out for even short periods of time in the cooler/cold weather. These are just a few examples of how different my life had become. My get-up-and-go days had literally gotten up and went!
Sadly as a result of all my new life requirements a lot of my carefree, noncommittal friends didn’t want to be held up with rules and stipulations– so as fast as they entered my life, they were gone from it. I never really thought I would miss my fair-weather friends until they were gone and I had no one.
For me, that was one of the most difficult adjustments to deal with. Learning to be okay with losing friends who I was so close with, and who saw or spoke to every day was extremely difficult and very upsetting for me. Feeling like I was all alone in this, and feeling that, because I was no longer that spur-of-the-moment, fearless friend I once was, I wasn’t worthy of having support, was a hard pill to swallow. Trust me, I knew because I was swallowing a ton of pills at that point.
It took me a long time to move on from my old life and to accept the new me, my new life, and the cards I was dealt. Don’t get me wrong, there are still times when I get angry or sad about things I can no longer do or certain situations I’m in. I think that if you’re living with a chronic illness, you’ll always have days when you miss the “old” you. It’s part of being human to want things you used to have, but I’ve learned to embrace the new me. In order to be happy and healthy in the “now” I had to let go of my past, my old life, and the goals that I had for myself before I got sick. I was doing a disservice to myself if I didn’t because I wasn’t allowing myself to grow and move forward with the life waiting for me.
Honestly, my life now is definitely nothing like my life 17 years ago, when I was a teenager without a care or a responsibility in the world. Still, I don’t think anyone’s life is the same as it was 17 years before. I look at it as a reinvention of myself. I do still have many of the same dreams and goals that I want to accomplish. However. those goals and dreams are a little different than they originally were. I have jumped in feet-first to be able to own my situation and live with the life and the body I have been given. Going back is never an option so I decided to move forward, and while I’m doing that to help others like me.
I am a patient advocate and a public speaker now, as well as a published author and a support group leader of two online patient support groups. I may not have a ton of friends anymore, but the few friends I do have are supportive, empathetic, encouraging and always there when I need them.
I have learned a lot over the years living a life of a chronically ill teenager, and now as a woman. I’d like to think I’m a better person for it. I don’t pretend to be okay all of the time, because I’m not, but I do try to stay positive and live in the moment and enjoy those moments as often as possible. Because I know for me those moments are limited. So I’m going to make them count!
How doe rare disease affect your daily life? Patient Worthy wants to hear from you!