30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Chronic migraine with Aura
2. I was diagnosed with it in the year: 2013 was when I got the official diagnosis
3. But I had symptoms since: 2012
4. The biggest adjustment I’ve had to make is: learning to balance my life with migraines. I’m a mom, college student, and I work outside the home.
5. Most people assume: Most people in my life are pretty good at understanding that a migraine is NOT just a headache. The assumption that is most difficult in my life has to do with managing my migraines versus curing them. As a migraineur and an advocate, I do not have an expectation of a cure from any medications or treatments. All I can do is remain hopeful that they will help me manage migraines and allow me to enjoy life.
6. The hardest part about mornings are: It is very difficult to have a regular sleep schedule with migraines, which often results in insomnia. Because I have a school aged child, and work first shift, mornings can be extremely difficult if I spent the night getting very little sleep.
7. My favorite medical TV show is: House, M.D.
8. A gadget I couldn’t live without is: My cell phone/iPad. Not only does it connect me to my friends, family, and my doctors, but it also connects me to Facebook where I have wonderful support groups of Migraineurs like myself.
9. The hardest part about nights are: sleeping with a migraine isn’t the easiest thing. When I sleep I need some kind of noise (radio, TV) but with a migraine I need quiet as it makes me sensitive to sound, which makes it extremely hard to sleep coupled with the pain of the migraine.
10. Each day I take 9 pills & vitamins. That’s on a “good” day. If I have a migraine, it’s more.
11. Regarding alternative treatments I: I’m a fan of anything natural. I’ll accept any help I can get to improve my quality of life with this diagnosis.
12. If I had to choose between an invisible illness or visible I would choose: This is not a question that I feel qualified to answer. I don’t have a visible illness so I can’t speak to how that feels.
13. Regarding working and career: it can be extremely difficult to work and have the diagnosis I do. I’m lucky to work in a place that is very understanding.
14. People would be surprised to know: That a headache is seldom my worst migraine symptom.
15. The hardest thing to accept about my new reality has been: that my migraines win – temporarily. And that it has caused strain on friendships as some just don’t truly understand and think that suffering from chronic migraine is as easy as taking a pill to stop them.
16. Something I never thought I could do with my illness that I did was: finish college… But I am very close to doing that and earning my associates!
17. The commercials about my illness: Commercials are often a great source of frustration for me because I feel as though they give a very unrealistic portrayal of migraines. If Excedrin works for some people, that’s great. However, there’s a large group of the population of Migraineurs that have migraines that are not helped by Excedrin. Don’t you think that I would rather pop an Excedrin than take more prescription pills or shots, or Botox injections. There is not a cure for migraines. Excedrin, prescription meds, Botox, etc will not cure migraines. They’ll only be effective as management options, both preventative and onset. Please advertise them as such, it’s a real slap in the face to Migraineaurs to act as though migraines can be cured.
18. Something I really miss doing since I was diagnosed is: leaving the house on a whim, without worrying about taking my “migraine bag” with me which houses meds for onset, and other treatment options I have available to me.
19. It was really hard to have to give up: the idea that life would ever be “normal” for me, and a part of my independence.
20. A new hobby I have taken up since my diagnosis is: I have started this blog, & I am working on connecting with other locals who have similar diagnoses. It’s important for people to understand that they’re not alone, & to know they have someone who understands and “gets it”.
21. If I could have one day of feeling normal again I would: I just do my best to enjoy the good days that I have. I do my best on those days to accomplish what I can, and make the most of them. I don’t have to be/feel “normal” for my life to be okay or even wonderful, as I have adjusted to my new sense of normal and I am very blessed in my life either way.
22. My illness has taught me: I am much stronger and much more patient than I ever imagined I could be. I’ve endured more than I thought was possible in my life. Some people will desert you but the people that stay by your side are the ones you truly want around in the end, and it can be a huge shock to see who those people are because sometimes it’s not who you always expect.
23. Want to know a secret? One thing people say that gets under my skin is: “You have ANOTHER headache?” Or when they offer up “cures” for migraines. No, grape juice won’t cure them. No, sticking my feet in water and a bag of peas on my neck will not cure them either. I appreciate the thought, but sometimes it can feel rather insulting.
24. But I love it when people: offer assistance when they know I’m fighting a migraine. The smallest gesture can mean so much when I am fighting a migraine.
25. My favorite motto, scripture, quote that gets me through tough times is: “Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.” – Thich Nhat Hanh
26. When someone is diagnosed I’d like to tell them: Advocate for yourself. Ask for what you need. Try many different things and never, ever, ever lose hope. Don’t let the diagnosis define you or ruin you.
27. Something that has surprised me about living with an illness is: Learning to advocate for myself as a patient has had a direct effect on my ability to advocate for myself and others in life who are diagnosed with migraine or chronic migraine.
28. The nicest thing someone did for me when I wasn’t feeling well was: loved me despite my issues and makes sure I know I am not a burden because of my diagnosis and its affect on my life.
29. I’m involved with Invisible Illness Week because: Raising awareness surrounding invisible illnesses is important to me. Just because you cannot see my illness, doesn’t mean it isn’t there. I have to speak up about it in order to make people aware of it. I want others to know that they are not alone.if we don’t stand up for ourselves, who will?
30. The fact that you read this list makes me feel: Grateful. It means that maybe next time you won’t be so quick to judge what you cannot see or what you do not understand, Or maybe now you know that you are not alone.