30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Migraine (Chronic)
2. I was diagnosed with it in the year: 1987 or 1988 (age 5 or 6)
3. But I had symptoms since: before age 2
4. The biggest adjustment I’ve had to make is: Giving up my career and not being able to work full time
5. Most people assume: That I have moments without pain/symptoms or that I can function like I once did. Or that Migraine is just a headache, and don’t understand all that comes with it and how hard it is for me to actually function on a day to day basis.
6. The hardest part about mornings are: Getting up! Some nights I don’t even get to sleep because of the pain/symptoms, so I try to sleep as long as I can.
7. My favorite medical TV show is: One of my favorites was Body of Proof.
8. A gadget I couldn’t live without is: My phone and computer. Sometimes it’s the only connection I have to the outside world and they can provide a distraction to the pain.
9. The hardest part about nights are: Getting to sleep with the pain/symptoms or staying asleep.
10. Each day I take __ pills & vitamins: (No comments, please) 4 to 6
11. Regarding alternative treatments I: have been and continue to be very open to them. Don’t assume that I’m not. Just have found that most of them don’t work or benefit me much.
12. If I had to choose between an invisible illness or visible I would choose: That’s a hard choice. With a visible illness, everyone would know what I’m dealing with or that I’m dealing with something and I probably wouldn’t like the stares. With invisible illness, at least I can still fool people into thinking that I’m normal or not dealing with an illness when I don’t feel like talking about or explaining anything. But, it’s frustrating when others don’t understand how bad I feel because I look like I feel fine. So, probably invisible.
13. Regarding working and career: I’ve been so heartbroken to have to leave my career and full time job. It was something I loved dearly and was (and still am) passionate about.
14. People would be surprised to know: there’s not a second of any day that I am without pain and symptoms from my Migraine. I’ve had ONE Migraine for 13 and half years. My pain level is usually at 8-9 or higher.
15. The hardest thing to accept about my new reality has been: how utterly lonely and isolated I can feel. Also, being able to actually enforce limitations. Up until about 6 years ago, I pushed through everything no matter how bad I felt to still work, have a social life and volunteer.
16. Something I never thought I could do with my illness that I did was: not sure… I’ve always been pretty determined and have persevered so much through the years.
17. The commercials about my illness: can be very annoying. It makes it seem like there is a one for all treatment for everyone. I know that those medications or procedures may help some people, which I am very grateful for! It’s wonderful that so many benefit from the things that are advertised. But, everyone has to find out what works or doesn’t work for them and it can be very tough to find out so many things don’t or won’t work for you.
18. Something I really miss doing since I was diagnosed is: being able to be spontaneous
19. It was really hard to have to give up: my career
20. A new hobby I have taken up since my diagnosis is: crafting or making things for others
21. If I could have one day of feeling normal again I would: plan a day full of activities with friends without having to worry about canceling or if I can even get through all the activities.
22. My illness has taught me: There’s always something to be thankful for and to look for the beauty in everything.
23. Want to know a secret? One thing people say that gets under my skin is: “Have you tried this?” 99% of the time, I have tried it and been disappointed (or heartbroken) when it didn’t help. Or I don’t have the finances to try it or continue it on a regular basis if I did notice it helped.
24. But I love it when people: Ask me how I am that day or how I’ve been lately. Send me a card or some form of encouragement, or something that makes me laugh.
25. My favorite motto, scripture, quote that gets me through tough times is: “I love people who make me laugh. I honestly think it’s the thing I like most, to laugh. It cures a multitude of ills. It’s probably the most important thing in a person.” -Audrey Hepburn
26. When someone is diagnosed I’d like to tell them: Remember that it could take time to find something or a combination of things that might work for or help you. There’s no cure for Migraines, so don’t think something will cure you (No matter what others try to tell you). It’s about managing your pain and symptoms and figuring out your triggers so that you can do your best to manage & avoid them.
27. Something that has surprised me about living with an illness is: How many others that are going through this too. And that with social media and the internet, so many support groups are out there to educate, help, encourage, listen and let you vent. There’s a huge community of us!
28. The nicest thing someone did for me when I wasn’t feeling well was: Fix me food and make sure I was actually eating or let me sleep
29. I’m involved with Invisible Illness Week because: it’s important to let others know they are not alone and to create awareness to help people understand all of us with invisible illnesses. Not just Migraine.
30. The fact that you read this list makes me feel: that maybe you want to try to understand what I am going through every day and know how to be there for me. Which I am thankful for! 🙂
Beauty From Affliction 