30 Things About My Invisible Illness You May Not Know

09Sep09

1. The illness I live with is:  Rheumatoid Arthritis (originally diagnosed as Juvenille)

2. I was diagnosed with it in the year: 1995

3. But I had symptoms since: 1993

4. The biggest adjustment I’ve had to make is: considering my limits each and every day.

5. Most people assume: I don’t know if I’d say most people, but a lot of people assume that since I am young, I am healthy.

6. The hardest part about mornings are: getting moving. Some days it is hard to move my hands, some it is my shoulders, others it is my feet. I never know what joint will bother me.

7. My favorite medical TV show is: House, for many reasons, but one is the fact that they actually did a story about JRA.

8. A gadget I couldn’t live without is: my jar opener and many other adaptive handles. Gripping and squeezing are usually difficult.

9. The hardest part about nights are: that sometimes it is hard to get comfortable. I can wake up many times in the middle of the night trying to fall back to sleep.

10. Each day I take 4 pills & vitamins. And inject myself weekly, which was very hard at first!

11. Regarding alternative treatments I: have tried them before and they were helpful, but did not help manage my disease the way medicines have.

12. If I had to choose between an invisible illness or visible I would choose: Neither? I think that both types of illness have their struggles and you really can’t compare them.

13. Regarding working and career: Working can be a daily struggle. Things like commuting, getting ready for work and making dinner after work can be difficult on bad days.

14. People would be surprised to know: Well, most people I don’t know are surprised to find out that I have arthritis. I think most of the people in my life are usually surprised at how difficult my day to day living can be.

15. The hardest thing to accept about my new reality has been: that there are things I just can’t do. As my disease has progressed I’ve gone from thinking that the only limits to my life were of my choosing, now I have limits that I must accept.

16. Something I never thought I could do with my illness that I did was: Going on a three country trip through Europe. I’m not sure I ever thought I absolutely couldn’t do this, but I was proud that I did.

17. The commercials about my illness: put out impressions about my illness that never really give people information about the disease. I appreciate that they show young, active people with RA, but this is most likely the widest exposure this disease gets.

18. Something I really miss doing since I was diagnosed is: picking up and going without thinking about how I would feel later.

19. It was really hard to have to give up: I have been lucky enough to not have to give up anything I love. I sometimes feel sad that I can no longer ski or ice skate, but these are very small things to lose for all that I have.

20. A new hobby I have taken up since my diagnosis is: Well, I’ve taken up many new hobbies in the last 15 years, but I have started writing a lot and really enjoy blogging. I’m working on two novels and have four blogs!

21. If I could have one day of feeling normal again I would: hike a mountain.

22. My illness has taught me: to appreciate every good day and be grateful for everything I have.

23. Want to know a secret? One thing people say that gets under my skin is:  when people throw around the word arthritis for minor aches and pains, or when they talk about arthritis as being for old people

24. But I love it when people: show how compassionate and caring they are. Most people are really receptive to any information I can give them about RA and want to help me in any way they can.

25. My favorite motto, scripture, quote that gets me through tough times is:  the serenity prayer – that I can change the things I can, accept those that I can’t and have the wisdom to know the difference.

26. When someone is diagnosed I’d like to tell them: that you shouldn’t suffer in silence. People in your life don’t know how to help you. They need you to help them understand what you need. Having this disease can feel very lonely, but you don’t have to be alone in it.

27. Something that has surprised me about living with an illness is: how strong I can be. I don’t always see it that way, but having a chronic illness means not being able to give up. You have to try all the time and make taking care of yourself a priority. And loving yourself is the best way you can show love to those who care about you.

28. The nicest thing someone did for me when I wasn’t feeling well was: I’m fortunate enough for people in my life to often do things when I don’t feel well, but my husband has done so many things for me. He tied my shoes when I couldn’t, he has cooked for me when I was tired and he has loved me when I felt unlovable. He has been an amazing gift in my life.

29. I’m involved with Invisible Illness Week because: it is important for people to consider the possibility that people who don’t look sick may not be healthy and it is even more important for those of us with these illnesses to talk about it so that we can spread awareness.

30. The fact that you read this list makes me feel: appreciative to know that people want to learn more about me and others who live with illness every day.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

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