Invisible Illness Week: 30 Things You May Not Know…

In support of Invisible Illness Week, I answered their “30 things” meme, to raise awareness.  Hopefully, it answers questions some of you have about my journey with chronic illness — especially since I’ve been too sick to do much writing on my RA autobiography lately.  I’d love to hear your thoughts, and if you (or someone you love) is living with an invisible illness, I’d love to have you join the conversation with your own answers!  There are a number of fantastic speakers at the virtual conference this week, which you can reach from the link above.  If you have time, I encourage you to check it out.  Hope to see you there!

30 Things You May Not Know About My Invisible Illness

1. The illness I live with is: Rheumatoid Arthritis (plus Fibromyalgia, Sjogren’s Syndrome and Celiac Disease)
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: RA symptoms since 2009, autoimmune issues since alopecia in childhood.
4. The biggest adjustment I’ve had to make is: I no longer know how I’ll feel hour to hour, day to day.  I may wake up unable to move, or I may be okay.  As a planner, it’s hard to reconcile that.
5. Most people assume: Whatever happens, I’ll handle it.
6. The hardest part about mornings is: Moving. I’m like the tin man.
7. My favorite medical TV show is: House!!!
8. A gadget I couldn’t live without is: My rollator, my wheelchair, my cane, my heating pads, my knee wedge pillow, and my jar opener. (Sorry, I’ve collected quite a few over time.)
9. The hardest part about nights is: Unrelenting pain.
10. Each day I take 22 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Use some creams, drink some teas, and eat natural foods.  I have not yet tried others, but am open to them.
12. If I had to choose between an invisible illness or visible I would choose: As hard as it is sometimes, I’d choose invisible.  There are days when I “look” normal, which gives me the opportunity to keep my illnesses to myself.  When I’m in a wheelchair or using my rollator, people look a bit too long, and often ask what’s wrong.  It helps me to understand the strength of those that must deal with that every day.
13. Regarding working and career: I’m in transition.  I spent the first two years after diagnosis trying to move forward in my career as if nothing had changed.  Finally, I got so sick that I could no longer work at all, and I’ve been on disability for 8 months.  Now, I just want to be well enough to work again in some capacity.  Whatever that looks like, I am certain the career I build now will look quite different.
14. People would be surprised to know: I am in pain 100% of the time, but my fatigue is as debilitating as the pain – some days more so. And I feel like a definition is needed here.  Fatigue = flu-like symptoms every day, not simply being sleepy.
15. The hardest thing to accept about my new reality has been: That my body is often incapable of doing what my heart and mind want to accomplish.
16. Something I never thought I could do with my illness that I did was: Talk about it so openly.  I even started a blog on the topic!
17. The commercials about my illness: Are infuriating. Most actors in them are 50+, though women in their 30s, like me, are the most likely RA sufferers.  Commercials also imply greater remission rates than patients actually realize.
18. Something I really miss doing since I was diagnosed is: Having the energy to fully enjoy life with my partner and son.  I cherish every second I have with them.
19. It was really hard to have to give up: Knowing how I’d feel tomorrow.  Oh, and bread.  🙂
20. A new hobby I have taken up since my diagnosis is: Meditation.
21. If I could have one day of feeling normal again I would: See #18.
22. My illness has taught me: To be happy with today, no matter what it looks like.  I no longer wait for some event in the future to make me happy. I look at my many blessings today, and focus my on those. I am happy and at peace every day.
23. Want to know a secret? One thing people say that gets under my skin is: When people equate their grandmother’s osteoarthritis in her wrist to my autoimmune disease.
24. But I love it when people: Ask about my illness, and genuinely want to learn more about the disease, or about me.
25. My favorite motto, scripture, quote that gets me through tough times is:  “Peace is the result of retraining your mind to process life as it is, rather than as you think it should be.” – Wayne W. Dyer
26. When someone is diagnosed I’d like to tell them: That they’re not alone.  There are fantastic bloggers out there, amazing resource sites full of information, and great communities where you can learn and connect with wonderful people who will help you through the shock of the initial diagnosis.  You’ll find your own strength as you go, and this virtual community can help in so many ways. I lean on and learn a ton from them.
27. Something that has surprised me about living with an illness is: As they’ve made me weaker physically, my illnesses have made me stronger mentally.  As a result of dealing with serious chronic illness, I have far more courage of my convictions in all aspects of my life.
28. The nicest thing someone did for me when I wasn’t feeling well was: Seeing me, and not just my illnesses.  Despite my wheelchair/rollator/cane/limp, I am the same person, and it can be easy to forget that.  Those closest to me have not.
29. I’m involved with Invisible Illness Week because: Awareness is necessary.  So many suffer with invisible illnesses, and many are misunderstood, underfunded, and in need of both for research and new therapies.
30. The fact that you read this list makes me feel: So grateful.  Thank you for taking the time, and for your support of Invisible Illness Week!

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2 thoughts on “Invisible Illness Week: 30 Things You May Not Know…

  1. Shari says:

    Oh Jess, I’m so sorry you have to go through this! You are the strongest woman I know, and I feel privileged to be your friend. I wish your body would let you continue to move at the pace you love because I know it’s got to be difficult to force yourself to slow down. I’m so incredibly glad that you’ve found the love of your life to share your journey and that you have Bear to help you enjoy life, no matter what cards you’ve been dealt. Your strength, outlook, and zest for life all amazing!

    • Thanks so much Shari!!! 🙂 The support of my friends and family are key to keeping me strong, and I’m blessed to have you in that group. Since we met, you have been an inspiration. And BTW, can you believe that first meeting was 10 years ago this month??? It’s crazy!!! xo

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