30 things you may not know about my invisible illness

In honor of Invisible illness week coming up, here are 30 things you may not know about my invisible illness. I did this last year, and it’s interesting to see that a lot of my answers have changed.

1. The illness I live with is: Lyme Disease and Fibromyalgia

2. I was diagnosed with it in the year: November 2011

3. But I had symptoms since: April 2010

4. The biggest adjustment I’ve had to make is: Changing my dreams. I dreamed of a fulfilling career and living a busy and fulfilled life. I’ll never be able to have a real career now, so I’ve had to change what I want for myself. Now I find fulfillment through other venues like blogging and helping others, though it’s a daily struggle to accept the lot I’ve been given.

5. Most people assume: That I’m either just fine or totally useless when I’m really in between. There are a lot of things I can do if I schedule my life right, but I can’t do whatever I want whenever I want. I wish people would just ask me what I’m capable of instead of just assuming either way.

6. The hardest part about mornings are: Trying to ignore the pain I feel as soon as I wake up. The pain can be overwhelming and is a huge obstacle to getting my day started.

7. My favorite medical TV show is: None, they’re all too fake. They make me angry because they portray doctors who care, and no doctor has ever sincerely tried to help me.

8. A gadget I couldn’t live without is: My kindle. It’s easy to hold when I’m lying down and it connects me to the world even when I don’t feel well.

9. The hardest part about nights are: Getting to sleep. I take enough sleep aids to knock out a horse and yet I still can’t sleep.

10. Each day I take __ pills & vitamins. (No comments, please) Six or seven, I’m lucky to be on the low end of the chronic illness spectrum.

11. Regarding alternative treatments I: Am open to the possibilities but will not try anything that proclaims to be a cure. If there were really a miracle cure out there, I would have heard about it. I’ve tried essential oils and I like them for certain things, but they will not cure me so please stop trying to sell them to me!

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I like that my illness is not on display because there are times when I can pretend to be healthy.

13. Regarding working and career: A long lost pipe dream.

14. People would be surprised to know: In my worst moments, I hate healthy people. Yeah, I’m not a great person.

15. The hardest thing to accept about my new reality has been: No career. You don’t realize how much everyone defines themselves by their job until you don’t have one. I am constantly asked, “what to you do?” And I have no answer for that because I am a professional sick person.

16. Something I never thought I could do with my illness that I did was: Live a joyful life. Things may not be how I imagined they would be, but I have a good life.

17. The commercials about my illness: Are a joke. They promote fibromyalgia drugs that make it look like one pill will give you your life back. The truth is the side effects are worse than the disease!

18. Something I really miss doing since I was diagnosed is: Rock climbing. It was a great way to deal with rage and frustration and now I’ve had to find other (less effective) ways to burn off anger.

19. It was really hard to have to give up: My social life. I like being surrounded by people and chronic illness can be very lonely and isolating.

20. A new hobby I have taken up since my diagnosis is: Blogging. I don’t profess to be a writer, but it helps to get my frustrations out through words since I can’t physically work off my anger anymore.

21. If I could have one day of feeling normal again I would: Take my kids out for a fun filled day. Maybe take them on a hike.

22. My illness has taught me: Patience and empathy. I’m not a particularly patient person, but nothing teaches your patience like losing control of your health. I’m also a lot more empathetic to other people’s problems now that I’ve experienced some major hiccups in my life.

23. Want to know a secret? One thing people say that gets under my skin is: Telling me that If I just tried harder, or exercised more, or tried this expensive natural product, or “insert sombody else opinion about my health here” I would be cured.

24. But I love it when people: Make an honest attempt to understand my illness and what my life is like. I have no problem answering questions about my health, I’m an open book.

25. My favorite motto, scripture, quote that gets me through tough times is: “The only way to get through life is to laugh your way through it. You either have to laugh or cry. I prefer to laugh, crying gives me a headache.” Marjory Hinckley

26. When someone is diagnosed I’d like to tell them: It gets better. It will be a rough road, but it gets better. You are strong enough to handle this, but don’t be afraid to ask for help.

27. Something that has surprised me about living with an illness is: Life goes on, whether you’re healthy or not. You just find a way to keep going.

28. The nicest thing someone did for me when I wasn’t feeling well was: Some friends came by and cleaned my kitchen, really cleaned! They even cleaned out my refrigerator! It was a small thing but it meant to world to me because I hate having a dirty kitchen.

29. I’m involved with Invisible Illness Week because: I want to promote awareness about invisible illness. Too many people assume that if you are not physically showing manifestations of your illness that you are faking it. The truth is there are millions of people with legitimate chronic illnesses that get treated like they are making them up.

30. The fact that you read this list makes me feel: Surprised you made it all the way through, and grateful.

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9 thoughts on “30 things you may not know about my invisible illness

  1. I tried to send you a message earlier and it didn't work. Hmmm If at first you don't succeed….. Anyway, I just found your blog page today. I read your story and your most recent blog. I understand so many of your feelings. I sooo understand the feeling of hating healthy people sometimes. It is hard to see healthy people out enjoying their lives and being able to plan and do fun things. I am guessing they take good health for granted. I doubt very much that you are not a great person. You are a sick person who is going through a lot! In my life, I feel like my whole world is pain. I was diagnosed in 2001 and it has been a LONG road! I do prefer laughing over crying. Crying can really mess up my makeup. 🙂 I will try to get back here again.

    1. Thanks begins with a K! I know exactly what you mean about your whole world being pain, pain takes over everything and when it gets bad it takes over everything. Your message may have worked, I've been away from email over the weekend, but I'll be sure to check it soon.

  2. "In my worst moments, I hate healthy people. Yeah, I'm not a great person." Ahahahaha! It's SO TRUE! 😛

    I resonate with SO many of your answers. I'll be doing this soon, so you'll see how similar we are. A rock climber, huh? I was never coordinated or strong enough to really get into that (I discovered it later in life), but I adore hiking. That and backpacking are the things I miss most, I think, in terms of activities I've had to give up.

    1. I wanted to work for the Forest Service SO BADLY when I lived in Idaho… but even then, before the fibro and connective tissue disease really showed up I had terrible health problems with my thyroid and adrenals, so it was out of the question. My sister got to work there for a while, though, and I was so envious.

      What I'm really grateful for, though, is the memories of the amazing places that I hiked and camped while I was there. I'm so glad that I was well enough to create those memories while I could, and I'm SO grateful that my long term memory still works well enough for me to recall many of the sensory details. Sometimes I can even pretend that I'm still there…

  3. I thought I was the only one that takes enough sleep aids to knock out a horse and still doesn't sleep. It has taken me two years of slow and steady progress but I can hike about two miles and walk about four. A lot of pain yes but I can do it. And to be fair Hiking in Florida is really really flat most of the time so I hesitate to even say hike.

  4. Thanks for posting this! I also have Fibromyalgia (among other things) and recently had to quit my job. I knew that I put a lot of my identity in my job, but after leaving, it really became obvious how much of my identity was in it. I am glad you are bringing awareness to invisible illnesses!

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