30 Things About My Invisible Illness You May Not Know

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know. So, here it goes:

1. The illness I live with is: Migraine disease
2. I was diagnosed with it in the year: 2002? It seems like a life time ago.
3. But I had symptoms since: I was about 13 - I'm 32 now.
4. The biggest adjustment I’ve had to make is: Not trying to push too hard because I am not super woman and it will hurt tomorrow if I push too hard today.
5. Most people assume: that Migraines are "just headaches."
6. The hardest part about mornings is: motivating myself to get moving since the pain is already there most days.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: my computer
9. The hardest part about nights is: insomnia and nausea
10. Each day I take *_9_* pills & vitamins. - that's what I have to take, if I don't feel well that number climbs quickly
11. Regarding alternative treatments I: have only tried aromatherapy
12. If I had to choose between an invisible illness or visible I would choose: visible, or one with a cure would be even better!
13. Regarding working and career: it's a challenge every day.
14. People would be surprised to know: I have some sort of pain every day.
15. The hardest thing to accept about my new reality has been: not being able to do the things I used to love like having a drink with friends, staying up late, going to a theme park and riding rides.
16. Something I never thought I could do with my illness that I did was: meet so many great friends who share my disease.
17. The commercials about my illness: annoying, stupid, and really don't help explain the disease for what it is. It's very sugar coated.
18. Something I really miss doing since I was diagnosed is: have a few drinks and stay up late
19. It was really hard to have to give up: my former life.
20. A new hobby I have taken up since my diagnosis is: blogging
21. If I could have one day of feeling normal again I would: probably be too scared to do anything since I would regret it the next day!
22. My illness has taught me: to be more compassionate and just because someone may look fine, that does not mean they are not suffering with something.
23. Want to know a secret? One thing people say that gets under my skin is: "We gotta get you a good doctor" or "oh you still have Migraines?"
24. But I love it when people: are willing to learn about the disease instead of judge me unfairly
25. My favorite motto, scripture, quote that gets me through tough times is: "The most authentic thing about us is our capacity to create, to over come, to endure, to transform, to love and to be greater then our suffering." - Ben Okri
26. When someone is diagnosed I’d like to tell them: learn all you can about this disease
27. Something that has surprised me about living with an illness is: how far we have to go
28. The nicest thing someone did for me when I wasn’t feeling well was: everything! My husband bends over backwards when I am sick. He knows if I can't do it, I must feel really crappy.
29. I’m involved with Invisible Illness Week because: We need to raise awareness and get the right information out there.
30. The fact that you read this list makes me feel: a little less alone

Things A Person With An Invisible Illness Hate To Hear

This is some of the top things I can't stand to hear from people who just don't "get it". It may be geared more twards Migraine, but I really want you all to add things you can't stand hearing in a comment - no matter what ICI you are suffering from.

This one is now a really popular web site: "But you don't look sick" I HATE this! So if I had a cast on my arm or was in a wheelchair or something, that would give me more of a reason to be in pain than the fact that I have a neurological disorder?

"We gotta find you a good doctor" - I have an excellent doctor, thank you. The fact of the matter is, I have an incurable disease, so until you walk a mile in my shoes and feel what my life is like and how hard I try to be well, please, just don't.

I have not had this one said to me, but I hear it a lot from others: "You're just not praying hard enough" or "You need to believe in God". First of all, what my religious beliefs are have nothing at all to do with my illness. I wonder what these people say to a person in their congregation or if their priest or minister has an ICI.....or what about a Nun? They are married to God so they should be really healthy by this persons standards.

This one is Migraine specific: "Oh, you have Migraines? I had one.....once, so I know what you are going through." Chances are, if you've only had one Migraine, it probably was not a Migraine. Saying that you know what I'm going through because you "had one once" is not realistic. I get them and tension headaches on a DAILY BASIS.

"Go to a chiropractor" - Yes, there are some that say chiropractic has helped them. I have been to one myself. I used to go all the time. But they will not cure my Migraines and they will cost me a ton of money in co-pays. Sometimes, a trip to the chiropractor (or even an acupuncturist) can trigger a Migraine. I don't know, I'm a believer in pharmacology! As my friend Kelly says: "Better living through science."

Another Migraine specific one, but I'm sure others with chronic pain hear something similar from time to time: "Oh, you have a headache? I have some Advil." First of all, Advil won't abort a Migraine. Second of all, it won't even touch the type of pain I experience from a Migraine or even a tension type headache. I have triptans, narcotics and muscle relaxers (oh my!) for the pain I have. Your Advil is like a tic tac to me, and if you know me and know that I go to a Migraine specialist every six weeks, along with take a handful of preventive drugs and supplements every day - all this does is make me feel bad about myself and remind me of how sick I really am.

Saying something like "oh, I heard about this new drug they are using for Migraines now on the news!" Chances are, it's not new, it's just the first time you've heard of it. Trust me, if it's about Migraine, I am pretty well read on what's on the market as far as preventives and other treatments. Again, this comment just annoys me more than anything else.

"I have a Migraine" - this one annoys me for two reasons. Either you just have a headache and you are exaggerating or you really have a Migraine and are too lazy to go to the doctor and get diagnosed. This one only applies to the people who misuse the word - not the ones that are diagnosed, going to the doctor, getting help and really know what they are talking about. This one also annoys me because people use it as an excuse to take off sick from work or, even better, drug seekers who know they may be able to score narcotics in the ER using "migraine" as an excuse. Thank you, fake migraine sufferers, for making the peoples lives who have Migraine that much more difficult to get proper treatment because now they thing ALL of us are just drug seekers. It takes a lot to get what we need when we end up in the ER due to having a Migraine for 3 days - and I'll tell you - as I'm sure every other Migraineur out there will agree - if an IV drip of straight up saline would take it away - then that would be what I'd want. It's not about the narcotics - a lot of us say up front to the ER docs that we would rather NOT be treated with narcotics. This is for two reasons: 1. then they know we are for real and not faking it. and 2. narcotics only mask the pain, they won't break the Migraine.

"Why don't you want a drink?", "Why won't you stay a little longer." All of those Why don't you or "you used to" type statements / questions just remind me that I can't drink that much because it will trigger a Migraine, and I need my sleep to stay on schedule as to not trigger a Migraine. Whining and trying to guilt me into something when you already know the reason behind it - especially if I am in pain - just makes me not want to deal. Thank goodness all my close friends have learned enough about what I go through to not do this to me. Some family members, well that's another story.

My friend Heather has a great little signature on her posts over at My Migraine Connection. It says: My disabling chronic illness is more real than your imaginary medical expertise.

I love this quote. It is so very very true! If only people would think before they speak, the world would be a much better place.

I can't wait to hear what you all have to say! I'm sure this is not all of them!