30 Things About My Invisible Illness You May Not Know

 

 

As part of Invisible Illness Week, I decided to do my part as someone actively living with an “invisible illness” and share part of my story. I’ve long held the notion that part of my journey towards good health involves not only making my situation visible to those in my my life, and understandable, but doing my part to create awareness.

  1. The illness I live with is: Rheumatoid Arthritis
  2. I was diagnosed with it in the year: 2009
  3. But I had symptoms since: college
  4. The biggest adjustment I’ve had to make is: learning to slow down and adjust to a “new normal” – whatever that truly is – which includes which means learning to give up some activities I did pre-RA, modify others and be brave enough to find new activities in my personal and professional lives that fill the voids left behind.
  5. Most people assume: I’m fine because I look fine
  6. The hardest part about mornings are: the 2-5 hours of morning stiffness, fatigue and joint pain that greets me before I get out of bed.
  7. My favorite medical TV show is: Private Practice
  8. A gadget I couldn’t live without is: ice packs
  9. The hardest part about nights are: the return of pain, stiffness and fatigue that often likes to strike at 3-4am like a super villain plotting his revenge
  10. Each day I take 9 pills & vitamins and once a week I take 2 injections with 3 additional pills.
  11. Regarding alternative treatments: I’m a big believer but shy away from a lot of it right now because I just don’t have the energy to do more than I’m doing.
  12. If I had to choose between an invisible illness or visible I would choose: neither…I wouldn’t wish this on anyone.
  13. Regarding working and career: RA impacts every decision I make now with my work life. I have to think about the pace I keep, the risk of infection, my work load. And, I’ve had to come to terms that returning to active clinical life is no longer an option. While I was already on that path, RA hastened that decision by about 5 years. This is truly one of my biggest hurdles and one I grapple with daily. It’s getting easier but still a daily battle as I learn to adjust to a very new normal of career goals and expectations for my future.
  14. People would be surprised to know: Many days I feel guilty for not accomplishing as much as “I should” even though I know having RA there is only so much I can muster the energy for in a given day. I guess I just haven’t reset my normal barometer to the right place yet.
  15. The hardest thing to accept about my new reality has been: I’ll never have the pre-RA “get up and go” I used to have.
  16. Something I never thought I could do with my illness that I did was: play my saxophone and go to the golf driving range
  17. The commercials about my illness: annoy me! They show pro-golfers golfing on Enbrel as if it’s a miracle drug. For most of us, we don’t get that level of improvement on any drug. Talk about false advertising.
  18. Something I really miss doing since I was diagnosed is: Golfing 9 holes
  19. It was really hard to have to give up: Travel anywhere I like, golf, and playing my musical instruments to my hearts content have all been impacted by RA…not so much to the point of having to give up entirely but to the point of requiring major pauses.
  20. A new hobby I have taken up since my diagnosis is: photography
  21. If I could have one day of feeling normal again I would: Travel to an exotic location and golf there…without any technology!!
  22. My illness has taught me: that to live your best life you have to live in the moment and surround yourself with positive people and situations. I no longer waste my energy on anything that doesn’t provide me with that postive force. This has been not only hugely beneficial for my health but for my entire family.
  23. Want to know a secret? One thing people say that gets under my skin is: “How are you feeling?” coupled with “You look good…you must be doing better.” I always try to be polite to those folks but here’s the bottom line. I have RA. It’s not going away. I have some good days. Many bad days. If you want to help, offer to do my grocery shopping, especially if you know I’m “not feeling well”.
  24. But I love it when people: Ask…How’s work? Any new articles or books coming out? That tells me they get I’m more than my invisible illness.
  25. My favorite motto, scripture, quote that gets me through tough times is: Live your best life.
  26. When someone is diagnosed I’d like to tell them: Good medical care is key but be prepared to switch rheumatologists at least once. It can take a while to find the right match. In addition, good support is essential, at least a good friend, spouse, etc. And, a hobby that makes you happy that you can do no matter how you feel.
  27. Something that has surprised me about living with an illness is: I’ve learned to appreciate what’s truly important in life and become a much more optimistic person. Pre-RA I was much more intense, like many physicians, and could tend towards the sarcasitc and even pessimistic, thanks to my training. One back operation and three years of RA later, I’ve shed that coat and take life much more in stride. I life more day to day and don’t try to plan as far into the future. While the struggles of RA can be challenging, most days are much more fulfilling and that is a true gift, and surprise, of this entire journey.
  28. The nicest thing someone did for me when I wasn’t feeling well was: My first time on methotrexate, a casual friend cooked a lasagna for me when she learned the meds had kicked me in the face, I got the flu and my husband was travelling.
  29. I’m involved with Invisible Illness Week because: I feel it’s important for people to know the realities of life for those of us living with invisible illnesses, not so people feel bad for us, but so people can help us live our best lives.
  30. The fact that you read this list makes me feel: hopeful that more people will learn how to be more comfortable when they learn someone has an invisible illness, and hopeful that those people who have relatives and friends with invisible illnesses will be less afraid to find ways to help those people.

 

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