Invisible Illness Meme
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: migraines and back pain
2. I was diagnosed with it in the year: 2000 and 2009, respectively
3. But I had symptoms since:1986 and 1995, respectively
4. The biggest adjustment I’ve had to make is: doing less – less of everything, and resting more.
5. Most people assume: that migraines are just a bad headache; I think most have never heard of someone having migraines or headaches everyday. (You’re too young to have chronic pain!)
6. The hardest part about mornings are: the pain before I eat and take my breakfast pills.
7. My favorite medical TV show is: House. Not for the medical part of it, but for the humor.
8. A gadget I couldn’t live without is: ice packs and heating pads.
9. The hardest part about nights are: staying asleep.
10. Each day I take __ pills & vitamins. (No comments, please): 18. Many of those are the same pills repeated.
11. Regarding alternative treatments: Ihave tried many and all have failed. I feel alarm bells going off when alternative practitioners ‘know’ they can help me. This hasn’t been the case at all so far.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. I can choose who to tell and who not to, and I can try to look and act as normal as possible. In some ways it seems that visible illnesses are given more credence and are more widely understood. But at some point you have to realize that whatever people think about me or my pain, they can go fly a kite, because I know my body and have to live with it.
13. Regarding working and career: I feel like my life has taken a huge detour — I planned to be a piano teacher after college, and have so far been unable to realize those dreams. It is very difficult to play and would be even more difficult to teach and listen to children playing.
14. People would be surprised to know: I’m not always happy and cheerful. I didn’t choose this life, and I’m just trying to make it through the best I can. Friends and acquaintances are always saying ‘You seem so cheerful, so happy. You never seem down and I forget that you’re in pain.’ It’s just not true. And thankfully my family and closest friends know this. They know I’m not Superwoman, and I”m not trying to be.
15. The hardest thing to accept about my new reality has been: sitting out and waiting and resting. I want to be doing, be in the middle of the action, listening to loud music…you get the idea.
16. Something I never thought I could do with my illness that I did was: …this was the hardest question. I feel like I haven’t turned a major corner yet. But recently, with my back pain, I was pleasantly surprised with how well my driving vacation (to Oregon and CA) went.
17. The commercials about my illness: are annoying and make me wish more real information was being spread, instead of ads for medications. It also makes migraines seem much simpler to treat than it is for some of us.
18. Something I really miss doing since I was diagnosed is: playing the piano for as long as I wanted.
19. It was really hard to have to give up: listening to music as loud as I wanted to. Also, chocolate.
20. A new hobby I have taken up since my diagnosis is: crocheting, making jewelry, and blogging!
21. If I could have one day of feeling normal again I would: play the piano, have a fun dinner with friends, clean, go out dancing and/or to a symphony concert.
22. My illness has taught me: doctors don’t always have the answers, sometimes answers take time, everyone is struggling with different issues — we just don’t always know it.
23. Want to know a secret? One thing people say that gets under my skin is: What do you do? It’s something I just need to ignore, but meeting new people, I hate this part of the process…I have to tell them I’m not going to school, I’m not working, I have these headaches and etc….it just changes the tone of the conversation, and they feel bad for me. So not what I”m after.
24. But I love it when people: hug me. Talk to me about their lives and their loves. Even though I have not a lot going on, I do have some things going on, and I love to talk about books or movies.
25. My favorite motto, scripture, quote that gets me through tough times is: Phil. 4:13, I can do all things through Christ which strengtheneth me.
26. When someone is diagnosed I’d like to tell them: to treat yourself kindly, to watch out for rebound headaches, do research on your own and don’t just listen to what the doctors tell you, there is a lot of comfort to be found from online communities.
27. Something that has surprised me about living with an illness is:how quickly time seems to pass me by.
28. The nicest thing someone did for me when I wasn’t feeling well was: there have been many – times my mother or MIL scrubbed my tub, times family or friends from church brought me meals.
29. I’m involved with Invisible Illness Week because: too often it is assumed that if it can’t be seen it isn’t real, it’s made up or imagined.
30. The fact that you read this list makes me feel: hopeful for the future. I hope people will get a better idea of what it’s like to walk my path and maybe try to learn more about diseases they don’t know about when they encounter them.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
test Filed under back pain/problems, blogs, headaches, meme, migraines | Comments (11)11 Responses to “Invisible Illness Meme”
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I really enjoyed reading this, Emily.
I’m the say way about alternative practitioners who say they are sure they can help me. Trust dies right there.
Taking a driving vacation is a huge victory! It must have been uniquely challenging with your back pain.
Diana
I sympathize on the Chocolate issue. I have a Pavlovian response to it after many years of migraines, chocolate = pain. Very good list!
You have a great blog on the internet, you make jewelry and you crochet! Sounds like a creative person to me. Remember the answer to the what do you do question does not have to be a job or school. You are a writer and an artist and a crafter…even if no pay is involved.
My gosh Emily, it broke my heart (and also made me smile) to read this post. It could have been written by me, every item. It cheered me so to know that SOMEONE feels the SAME way I do. I think your headaches are worse than mine, but you know, I have one every day and most days they are at least 4/10 and some days I sit at work with a brutal headache. I never have full-blown nausea-type migraine, but my tension headaches get very bad and I sit there trying to work and it is HELL. Especially having a technical job where you need to think clearly. So often I want to give up. But I just do one more day. Luckily I can. I can see that if they were any worse, like yours, I would not be able to do it. They are just barely manageable.
And like you, I have terrible back pain. David complains that I wiggle around in bed a lot and it is just habit but it is because my back aches so bad from hips to neck that I am always moving to get comfortable. There is no comfort. Ice packs and heat and Robax Platinum are my friends. And I put a lot of peppermint oil on my neck (it is hot and distracts me!) at night.
One of my colleagues said “I notice that you move around a lot in your chair in meetings and that sometimes you sit sideways or not straight – do you think your back pain is because of your bad posture?) I told him that my back pain CAUSES my bad posture as I am always trying to move to get the pressure off a certain part of my back. He looked at me like he thought I was nuts. AS far as he is concerned, my back pain is my fault. Idiot. I am so sick of helpful people. If another person asks me if I’ve tried acupuncture, I would like to scream. I know they are trying to be helpful but really, you reach a point…
I would like to meet you some day because it is clear we are experiencing the same thing in life, inside. I think your head pain is worse, but with chronic anything, even average pain is exhausting. I am so exhausted, so spiritually depleted a lot of the time. Working full time is exhausting and NO ONE understands. The people around me have compassion burnout I think, and most of the time I don’t talk about it. It is so hard being with people while you have a bad headache and they are fine. You simply cannot compete in that world. I cannot. I want to, but I cannot. I cannot work full time and exercise and blog and read and keep a clean house and garden and do investing and manage everything. I am so drained. I feel very depressed a lot, but like you, I keep a smile on my face.
So many people say “you are such a happy person” or “you are so extroverted”. What they don’t know is that i feel like jumping off a bridge or screaming most days, at least once. ANd that I am FAKING all the time. I am acting what I think NORMAL is. Because I do not feel it.
I am noticing that over time, I am becoming more JEALOUS of normal people. For a long while I accepted my pain. But lately, I am furious. I feel increasingly angry. I think because my h/a’s have been especially bad and you just get so raw and burned out from it. So I have decided to try to find a pain counsellor, a psychologist who I can talk to about chronic pain. SOmeone who might have some coping strategies, etc. and just someone to LISTEN. I have run out of listeners.
I will let you know how it goes, once I find one.
Love and a hug to you. Hang in there. Oh, we could talk! I felt your pain and frustration and your hopefulness in every line you wrote. You are still YOU in there, but modified.
xo Terri
I read the whole thing. Good post. And let us know if you want us to beat anyone up
Wow, that’s a great post. I think it’s important people know more about invisible illnesses (esp. migraines) and how they affect all aspects of your life, and also what little things they can do to help.
I had one of my worst migraines about a year ago and i was laying down. My partner had decided to cook dinner ( at the other end of the house), and came in about half way through to check if he was making too much noise chopping up the vegetables. It was the sweetest thing, one that i still appreciate.
Here is a virtual hug for you because in the midst of all your pain you still think of others and do nice things for them. Love you! Mom K
I really enjoyed reading that. It’s good stuff to know. I think you rock and I hope you come outside and visit sometime this week.
This was a great post because it was really educational. Thanks for sharing!
Such a great post! I love you Emily, I’m so glad that you and my husband were friends and that I got to know you. It seems I meet more and more people with invisible illnesses or problems. I admire you so much. You give me so much courage to accept my own problems of depression and not try to ignore it. Love you lots!
P.S. I also LOVE house. That Greg House is my current fantasy crush… I love his attitude and he has the greatest lines! I try to not talk about some of my t.v. show loves too much, because I haven’t found too many people to talk to. What other t.v. shows do you like?
Great post Emily. I especially like #25. Same for me.
Thanks, Emily. That can’t have been all that easy to write, but I feel like I understand where you’re coming from more. You’ve always been one of my favorites!