30 Things About My Invisible Illness You May Not Know
- The illness I live with is: Sjogren’s Syndrome, but I also have Autoimmune Pancreatitis, Autoimmune Hepatitis, Hashimoto’s Thyroiditis, Fibromyalgia, and Arthritis.
- I was diagnosed with it in the year: 2007
- But I had symptoms since: I was a small child.
- The biggest adjustment I’ve had to make is: to life in a wheelchair.
- Most people assume: that I’m too young to have this many health problems.
- The hardest part about mornings are: waking up way to early in pain and never getting enough sleep.
- My favorite medical TV show is: House, I suppose, but I don’t really watch it anymore. I have a hard time concentrating on TV.
- A gadget I couldn’t live without is: my mac. It is my connection to the rest of the world.
- The hardest part about nights are: trying to get sleepy despite the pain.
- Each day I take 28 different medications. (No comments, please)
- Regarding alternative treatments I: am only open to trying ones that have been shown to work in some sort of clinical trial.
- If I had to choose between an invisible illness or visible I would choose: an invisible one. Since I’ve recently started using a wheelchair, my illness has become move visible and I long to look “normal” again.
- Regarding working and career: I am currently on disability.
- People would be surprised to know: that I don’t remember what “no pain” feels like.
- The hardest thing to accept about my new reality has been: that I can’t just push through the pain and exhaustion without making myself sicker.
- Something I never thought I could do with my illness that I did was: travel for pleasure, but I recently went to an alternative reality gaming conference in Portland.
- The commercials about my illness: don’t exist (which could be why no one seems to have heard of it).
- Something I really miss doing since I was diagnosed is: hiking and other physical outdoor activities.
- It was really hard to have to give up: my independence, but I’ve had to learn to accept a lot of help from others.
- A new hobby I have taken up since my diagnosis is: scrapbooking. I’m completely obsessed and even do it from bed when I can’t sit up at the table.
- If I could have one day of feeling normal again I would: backpacking through Australia.
- My illness has taught me: that happiness is where you make it for yourself.
- Want to know a secret? One thing people say that gets under my skin is: “You just need to exercise more.”
- But I love it when people: Call or email me out of the blue to let me know they are thinking of me even if I haven’t been up to hanging out lately.
- My favorite motto, scripture, quote that gets me through tough times is: Everything might not happen for a reason, but you can make a reason out of everything that happens.
- When someone is diagnosed I’d like to tell them: that life isn’t over and that they will find ways to cope and adjust.
- Something that has surprised me about living with an illness is: how much opening up and sharing about my illness has given me the opportunity to meet new people who in turn share about themselves.
- The nicest thing someone did for me when I wasn’t feeling well was: lug all my scrapbooking supplies to me in the hospital, so I could take my mind off being there with my favorite activity.
- I’m involved with Invisible Illness Week because: I hope by raising awareness people will have more sensitivity and empathy for the people in their lives with invisible illnesses.
- The fact that you read this list makes me feel: hopeful that my sharing about my experiences will make positive difference.
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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IneffaBelle.com
PonyBelle
We love you Belle!
You are doing a great job handling life with several invisible illnesses. I am really glad you have found some enjoyable ways to cope. It is really essential.
Thank you for sharing your story through this meme. I hope that all of our input is raising awareness. I will be praying for you!
SOOOOO loved this post! And so love stopping by to say "Hey!" and "How are you?"
Wishes for a pain free day for you. ((Hugs)) my friend
Ellen S
Aww thank you so much! I'm doing really really well! Really happy!
How have you been?
((HUGS))