Invisible Illness Week

Nearly 1 in 2 people in America struggle with a chronic illness, yet about 96% of these illnesses are invisible. Words like Fibromyalgia, Diabetes, and Multiple Sclerosis have become common household words, but what about the millions who struggle with chronic illnesses like Complex Regional Pain Syndrome, Polycystic Ovarian Syndrome, or Lupus? Have you heard of those?

I’m one of the millions who struggle with pain and illness every second of my life, yet it can rarely be seen. Invisible Illness Week is the week of September 14 through the 18 and the web site Invisible Illness Week has an online conference during that week to help promote awareness for those who struggle. They also have a list, following the style of the popular Facebook lists, for those who struggle with an Invisible Illness. I’ve filled it out and am now sharing with you. If you have an invisible illness of any sort, I’d like to encourage you to post your own list somewhere.

1. The illness I live with is: Complex Regional Pain Syndrome in my left hand/arm/elbow (there are others, but this is the big one)

2. I was diagnosed with it: February 2009

3. But I had symptoms since: January 2009

4. The biggest adjustment I’ve had to make is: not being able to take on multiple tasks at once because I don’t have the energy, the pain slows me down, or my brain isn’t working quite right

5. Most people assume: because I look pretty normal, I’m doing better, but I’m good at hiding pain and I hate talking about it, so most people can’t see the pain and don’t really try to

6. The hardest part about mornings are: waking up exhausted in spite of spending hours in bed

7. My favorite medical TV show is: House because I love the medical mystery aspect of it (I’m also really looking forward to the start of Mercy, hooray for a nursing show!)

8. A gadget I couldn’t live without is: my laptop because it allows me to connect to others with CRPS and connects me with the world when I can’t always get out

9. The hardest part about nights are: lying awake at odd hours, exhausted but unable to sleep because of the pain

10. Each day I take 21 to 29 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried a lot, but have gotten nothing but rejection, it hurts and I’m sick of the false hope they offer, only to snatch it away from me

12. If I had to choose between an invisible illness or visible I would choose: I’m not sure, it is nice that I can try to hide my illness if I choose, but sometimes I think I would be treated better if it were visible, people would know and would be more caring, but it could also get annoying

13. Regarding working and career: I do graphic design on the side and am currently a full-time student as well

14. People would be surprised to know: I have a high pain tolerance, I don’t know say anything unless the pain is completely unbearable, I may be having a 7 or 8 day and you won’t notice much (I don’t think), yet at the same time, I long for someone to see me for who I really am

15. The hardest thing to accept about my new reality has been: the fact that I’m going to live with this for the rest of my life, it will never go away, yet it won’t kill me

16. Something I never thought I could do with my illness that I did was: I’m really proud of being able to tie my shoes right now. Though it hurts, I do it and I’m happy (I stare at my shoes often now, I never knew they could be so exciting!)

17. The commercials about my illness: What commercials? No one has heard of CRPS and there are no FDA approved drugs for the treatment of it.

18. Something I really miss doing since I was diagnosed is: sleeping through the night, doing crafts and things without thought

19. It was really hard to have to give up: my independence, such as driving (though I’m doing it now), making decisions, etc.

20. A new hobby I have taken up since my diagnosis is: art, such as painting and sketching, it is great therapy physically and emotionally, I can really let my feelings come out in art that I’d never share in words

21. If I could have one day of feeling normal again I would: go somewhere cold and never think twice about using my hand, I’d make a big snow ball, go skiing, and then skydive, then I’d go and sleep all night long and wake up the next morning refreshed and not one bit exhausted!

22. My illness has taught me: to truely treasure the important things, I’ve grown so much closer to God over the past months, He is my Rock!

23. Want to know a secret? One thing people say that gets under my skin is: people who say “wow, you look good for being sick” or “you don’t look sick” or “you are looking much better”

24. But I love it when people: accept me for who I am, injury and all, and treat me the same, yet are understanding when something has to be different

25. My favorite motto, scripture, quote that gets me through tough times is: “When CRPS seems to have taken everything away, God steps in and uses my broken body in ways I never imagined.” and “Trust in the Lord with all your heart and lean not on your own understandings, in all your ways acknowledge Him, and He will direct your paths.” Proverbs 3:5-6

26. When someone is diagnosed I’d like to tell them: talk about it with someone, whether a friend, family member, or counselor, it is so easy to “stuff” it, but you really need to talk to someone

27. Something that has surprised me about living with an illness is: the community of others who have invisible illnesses, I never knew the world of ill who were living among me

28. The nicest thing someone did for me when I wasn’t feeling well was: a professor just sat and listened to me as I sobbed and broke down; a room mate who sacrificially gave up hours and hours of her time to drive me to appointments and therapy when I couldn’t drive (after she and another friend “revoked” my license); a friend made me laugh and cheered me up, distracting me from the pain; and a doctor who is sympathetic, listens to everything I say, and spends as much time with me as I need

29. I’m involved with Invisible Illness Week because: I have discovered millions of others who have an illness that cannot be seen, yet they are struggling, whether it is physically or emotionally with the devastation of living with an illness and I want to help spread the word to those who don’ know.

30. The fact that you read this list makes me feel: happy, I love that you were willing to take time out of your day to read about me and learn a little more about me. I’d love it if you could respond and let me know that you read this. If you have an invisible illness, please let me know!

3 comments

  1. Hi Amber! I have read your posting with much interest. I appeciate the insight it gives me into you and others I know who are suffering sudden onset unexplained synddromes and are still looking for answers. Thanks for being vulnerable and posting your thoughts and feelings. It is also helpful to know what has and has not helped you. Jane~

  2. I’ve used prescription drugs to help with my fibromyalgia with little success. I’m trying essential oils to see if I can find some relief.

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