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30 Things About My Invisible Illness You May Not Know

Posted Sep 11 2012 11:00am

1. The illness I live with is
  • Obsessive Compulsive Disorder
  • Fibromyalgia
2. I was diagnosed with it in the year
  • 2011 (OCD)
  • ??  (Still working on a final diagnosis for Fibromyalgia)
3. But I had symptoms since
  • I've had symptoms of OCD since I was a child, though it increased dramatically in my 20's. Since I was in a car crash when I was two years old and have dealt with pain for most of my life, it's hard to pinpoint when my fibromyalgia symptoms really started. I started taking severe notice of them in 2011.
4. The biggest adjustment I’ve had to make is
  • Knowing my limits and understanding that just because I may look healthy, doesn't mean that I am.
5. Most people assume
  • That I'm exaggerating. That I'm lazy. That I'm sick because I'm overweight. That because I'm young means I'm healthy and don't know what "real" pain is.
6. The hardest part about mornings are
  •  Getting out of bed and walking. My joints are so stiff that it often feels like splintering wood under my skin when I move my toes and put weight on my feet.
7. My favorite medical TV show is
  • House and Scrubs.
8. A gadget I couldn’t live without is
  • My computer. It's a doorway to my support system.
9. The hardest part about nights are
  • Lack of sleep. I've heard other people say that Fibromyalgia means in the morning you can't wake up and at night, you can't go to sleep. That's the truth!
10. Each day I take 6-10 pills & vitamins.
  • And that doesn't even include the pills I take to manage the pain.
11. Regarding alternative treatments I
  • Wish my insurance carried them!
12. If I had to choose between an invisible illness or visible I would choose
  • Visible. People know that visible illnesses exist so you're never questioned about how you feel. When you have an invisible illness everyone just thinks that you can deal with it, think happy thoughts, push through, or that you're exaggerating or faking it.
13. Regarding working and career
  • When I got married, my husband and I agreed that I would stay at home and take care of the house and family. Now I don't have a choice. I used to be proud of being a housewife, now that it's no longer my choice, I feel like a burden.
14. People would be surprised to know
  • How much I hide my illnesses from others. Even those who know about my illnesses don't see what I'm hiding behind my smiles. They don't know about the flu-like pain my muscles feel like while we're out to lunch. They don't know the horrible things my OCD makes me think while I'm doing the dishes, or talking a walk, or riding in the car.
15. The hardest thing to accept about my new reality has been
  • How people react. I have a great support system online, so when I began talking about my illnesses to family and friends, I was met with less than supportive reactions. Often critical, shaming, and hurtful.
16. Something I never thought I could do with my illness that I did was
  • Find a community of people like me online.
17. The commercials about my illness
  • Always seems to include the phrase "Side effects of this medication may include suicidal thoughts". 
18. Something I really miss doing since I was diagnosed is
  • Feeling accomplished.
19. It was really hard to have to give up
  • Socializing.
20. A new hobby I have taken up since my diagnosis is
  • Makeup!
21. If I could have one day of feeling normal again I would
  • I would just enjoy having a normal day where I feel like everyone else.
22. My illness has taught me
  • My husband is my rock.
23. Want to know a secret? One thing people say that gets under my skin is
  • "I know exactly how you feel, I (insert random symptom/injury/illness in what I call the game of "I'm worse off than you are.")
  • "I'm so OCD, I just love having a clean house." OCD isn't a preference, it's an illness.
  • "You'd feel better if you just lost the weight."
  • "You don't look sick."
  • "I know someone who had fibromyalgia and they just did (insert miracle) and cured it. You should just do that."
24. But I love it when people
  • Find ways to cheer me up. I'd ask for help, but sometimes I just don't know what I need or what you could do.
25. My favorite motto, scripture, quote that gets me through tough times is
  • Depression lies.
  • People cry. Not because they are weak, but because they've been strong for too long.
26. When someone is diagnosed I’d like to tell them
  • Never give up. I know you're not faking it. I understand. It gets better.
27. Something that has surprised me about living with an illness is
  • You learn who your real friends are.
28. The nicest thing someone did for me when I wasn’t feeling well was
  • My friend Lisa brought me a box filled with makeup and a card for Mother's Day because another invisible illness I deal with is infertility.
29. I’m involved with Invisible Illness Week because
  • Awareness needs to be raised! People need to know, people need to understand what we go through. Others like me also need to know that they are not alone in this.
30. The fact that you read this list makes me feel
  • Hopeful. Loved. Supported. 
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Also linked at: Pour Your Heart Out
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