Lisa Copen created a list called, "30 Things About My Invisible Illness You May Not Know." People with invisible illnesses fill it out and post it on their blogs and facebook pages during National Invisible Illness Awareness Week. I missed the official awareness week this year, but here is my belated list!
1. The illness I live with is: Dysautonomia (dysregulation of the autonomic nervous system). I have also been diagnosed with Ehlers-Danlos III, a genetic connective tissue disorder sometimes also referred to as Joint Hypermobility Syndrome.
2. I was diagnosed with it in the year: The Ehlers-Danlos diagnosis came sometime around 1993. Dysautonomia was diagnosed in 1995.
3. But I had symptoms since: It’s hard to say, but somewhere between 1985 and 1992.
4. The biggest adjustment I’ve had to make is: letting go of dreams and desires that are good (having a large family; being an active, homeschool mom; teaching at church) in order to gratefully accept and submit to God’s will for my life.
5. Most people assume: That if I’m smiling and looking “good” that I am doing well physically.
6. The hardest part about mornings is: waking up and getting my body moving. It is a slow process. If I get out of bed too soon after waking up, I will pay for it not only for the rest of the day, but for 2 or 3 days to come.
7. My favorite medical TV show is: I don't typically watch medical tv shows.
8. A gadget I couldn’t live without is: my cell phone. Having a phone within arm’s reach at all times allows me to call Will anytime I need help. I could live without a cell phone, but having one sure makes life easier. It is also nice to be able to text friends when I’m too tired to do email.
9. The hardest part about nights is: when I have to go to bed early and miss out on family time.
10. Each day I take just a few pills and a whole bunch of vitamins and supplements.
11. Regarding alternative treatments, I: will use ones that help me, have a scientifically reasonable mechanism of action, and don’t go against what God says in the Bible.
12. If I had to choose between an invisible illness or visible I would choose: to leave it up to God. This is something that is best left in His hands.
13. Regarding working and career: I never was a career driven person. I don’t feel like I’m missing out on that. My desire is to be a godly wife and mother, which is something I can do even while being sick.
14. People would be surprised to know: that living with a chronic illness can be very lonely.
15. The hardest thing to accept about my new reality has been: that I can’t take care of my children by myself all day long.
16. Something I never thought I could do with my illness that I did was: get married and have children.
17. The commercials about my illness: don’t exist.
18. Something I really miss doing since I was diagnosed is: swimming and figure skating.
19. It was really hard to have to give up: being able to exercise and be active. Even small amounts of exercise only make me more weak and tired in the long run.
20. A new hobby I have taken up since my diagnosis is: crocheting.
21. If I could have one day of feeling normal again I would: sharpen my figure skates and go ice skating with my family. I would love to teach my children to ice skate, and having the opportunity to skate, spin, and jump again would be so much fun!
22. My illness has taught me: that life in a world affected by sin is hard, but with Jesus in your life, it can be full if joy, and it is worth whatever trials come your way. As Joni Eareckson Tada says, “It is worth anything to be His friend.”
23. Want to know a secret? One thing people say that gets under my skin is: “You are doing so well today!” In reality, I am likely struggling to sit up, smile, and carry on a conversation.
24. But I love it when people: talk to me and genuinely want to be my friend.
25. My favorite motto, scripture, quote that gets me through tough times is: “Therefore we do not lose heart, though outwardly we are wasting away, yet inwardly we are being renewed day by day, for our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.” 2 Corinthians 4:16-17
26. When someone is diagnosed I’d like to tell them: I’m sorry you are going through this. I will be praying for you. If you want to talk, I’m here for you.
27. Something that has surprised me about living with an illness is: how normal it becomes.
28. The nicest thing someone did for me when I wasn’t feeling well was: when a neighbor made supper for my family every week for 10 months straight. She didn’t just make enough for one meal; there were always leftovers that lasted for another 1 or 2 days. She also took care of William and Adelaide for me one afternoon a week so that I could rest. She already had 3 children of her own, plus one on the way, and she still served us with joy. She blessed us in ways I could never repay, and I pray that the Lord will bless her in return!
29. I’m involved with Invisible Illness Week because: I think it is important to share my story in case it might help someone else.
30. The fact that you read this list makes me feel: a little bit weird, but mostly grateful!