During September, Invisible Illness week came and went. I had other things on my mind in September, so I’m talking about it now. While cerebral palsy is a disability and not really an illness, I still feel that it fits the bill in my case.
If you’re wondering how it’s invisible, the reasons are these:
- I don’t ‘look’ disabled. I really don’t like this one, because I feel like nobody should be labeled that they ‘look disabled’ or ‘don’t look disabled’. But out in the world, people like labels.
- When I’m walking around in public, or even in my wheelchair, nobody knows that I’m in a lot of pain. I look happy (because I am happy, based on things that have nothing to do with my physical circumstances). I think that, at least for me, walking (or rolling; mostly rolling) around with a sad face, or being angry all the time, would be detrimental to my life and to the people around me. Especially my kids.
- Still a lot of my friends and family, even doctors, have a hard time understanding it. I’ve been a lot more open about the pain lately, and losing my mobility, but sometimes I still get the feeling that a lot of people don’t understand it’s more than just a limp.
Anyway, I found this survey on another blog, and reading her answers was interesting, so I thought I would post it too 🙂 Surveys are a fun way to learn things about other people, and even yourself, while your searching your insides for the answer to a question you had never thought to ask yourself. Here goes!
1. The illness I live with is: Cerebral Palsy
2. I was diagnosed with it in the year: 1987 I think? Maybe ’86. I was a year and a half or two.
3. But I had symptoms since: I was born I guess, just nobody really recognized them for a while. CP symptoms are similar to regular newborn/baby characteristics.
4. The biggest adjustment I’ve had to make is: Not being able to do whatever I want, whenever I want. Having an A-type personality and losing your mobility is hard!
5. Most people assume: Oh… where do I start with this question… Most people assume that I’m fine. That limping is my biggest problem.
6. The hardest part about mornings are: Everything. The pain is worst in the morning. It wakes me up before the sun. Which is good anyway, because I need a good couple hours to get it under control before the kids wake up.
7. My favorite medical TV show is: TV is boring. Turn up the radio. Or X Factor. X Factor is good.
8. A gadget I couldn’t live without is: My iPhone. Same answer as the last girl. But it’s oh. So. True.
9. The hardest part about nights are: Falling asleep when my legs are aching. Also, same answer as the last girl, who has Spina Bifida. I would add that staying asleep while things are aching is also a big challenge.
10. Each day I take at least 7 pills & vitamins. Lately it’s in the 20’s (Don’t judge me, a lot of ibuprofen for swelling and inflammation. And it’s OTC because I don’t wanna pay $100 plus to get and buy a prescription)
11. Regarding alternative treatments I: Have tried them all.. To help with pain and overall health and wellbeing. Again, same answer as the last girl. I would add that nothing seems to really help.
12. If I had to choose between an invisible illness or visible I would choose: 10 years ago I wouldn’t have changed it. Now I would. Well, maybe not, because I would have to choose a visible one, which has it’s advantages, but I don’t know if its a good trade off.
13. Regarding working and career: I miss working, and making more money than I recieve on Social Security, but I’m not going to let it bother me because I can’t change it. And some of the things I get to do now are pretty awesome.
14. People would be surprised to know: I feel like I fell/am falling through the cracks, medically speaking. I didn’t have any medical care from the time I was 13 until I got my first job with insurance at 23. And now, they don’t know what to do with me. I keep hearing about other people that are having surgeries that are working wonders for them, and I think a few of them could really help me, but I don’t have insurance right now 😦
15. The hardest thing to accept about reality has been: Losing my mobility, resulting in not being able to raise my kids or live my life the way I really want to. I don’t know that I’ve really even accepted it. I have for right now, but I still have hopes that it can be better.
16. Something I never thought I could do with my illness that I did was: Wear flip-flops. Stupid I know, but if you only knew…
Thank you, Old Navy, for making cheap flip flops that stick to my feet so I can wear them.
17. The commercials about my illness: Are always about suing doctors for medical malpractice.
18. Something I really miss doing since my disability has progressed is: walking, running, exercising, not being in pain… it’s a long list.
19. It is really hard to go without: prescription drugs! Same answer as the last girl. But seriously I couldn’t get out of bed without them. Or stay in bed, so that’s a problem. But most of all I wouldn’t be able to take care of my kids.
21. If I could have one day of feeling normal again I would: Go on a hike with my family. Climb a mountain or something. Fit in as much as I possibly could.
22. My illness has taught me: You can never truly know, or judge, what another person is going through.
23. Want to know a secret? One thing people say that gets under my skin is: You’re faking it. You don’t really need that wheelchair. You’re in a handicap spot. You could work if you really wanted to. Basically any kind of doubt that I have the trouble that I have. I think that stems from having some actual family members and friends say things like that.
24. But I love it when people: Recognize that despite my disability, I’m just another person, mom, etc. When they make the effort to get to know the person in front of the disability (I don’t think I’m behind it, it’s behind me), instead of being prejudice.
25. My favorite motto, scripture, quote that gets me through tough times is: “Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy” James 1:2, and “Pray about everything; worry about nothing. Tell God what you need, and thank Him for all He has done.” Philippians 4:6
26. When someone is diagnosed I’d like to tell them: Don’t let anyone tell you what you can or can’t do.
27. Something that has surprised me about living with an illness is: Getting worse. I was always told it wouldn’t get worse. What they meant was that the brain damage wouldn’t progress.
28. The nicest thing someone did for me when I wasn’t feeling well was: A lot of things. Carry me, raise money for a wheelchair so I wouldn’t have to keep walking, accomodations and days off at work…
29. I’m going to get involved with Invisible Illness Week next year because: People need to be aware of what other people around them might be going through, and that they shouldn’t be quick to judge.
30. The fact that you read this list makes me feel: Funny way to end, but I’m glad you took the time to get to know me a little better 😉
my (dis)abled life 
Fantastic post!! My first thought is about climbing mountains. We have watched you climb more mountains in your life sweetheart than all the Everest hikers put together 🙂 but I know what you were talking about. You are the most incredible writer, EVER! You should publish. Love Mom