September 9-15 is National Invisible Chronic Illness Week. As part of the effort to get out the word and spread understanding I’m going to be taking part by writing several blog posts. The first is a meme that they do every year and one I’ve done in the past but rarely ever share…
30 Things About My Invisible Illness You May Not Know
1. The illnesses I live with are: Undifferentiated Connective Tissue Disorder, Sjögren’s Syndrome, Fibromyalgia, Raynaud’s Disease.
2. I was diagnosed with the first in the year: 2006
Sometimes you feel like life is passing you by.
3. But I had symptoms since: 1986 (my first flare was when I was 13, but I didn’t know it at the time)
4. The biggest adjustment I’ve had to make is: Admitting I can’t do things and need help.
5. Most people assume: That something I or someone else did caused the illnesses and if that changed it I would get better. My immune system doesn’t work right, and that’s not anyone or anything’s fault – it started so long ago I don’t think you can place blame anywhere.
6. The hardest part about mornings are: Getting up – I never feel like I’ve had enough sleep. No matter what time I get up I always feel like I could go back to sleep.
7. My favorite medical TV show is: I don’t usually watch them – I’ve seen and lived enough in real life that the TV shows are more frustrating than entertaining.8. A gadget I couldn’t live without is: My cell phone. My new phone can do everything from texting to word documents and slide presentations. I can do just about everything I need to do on it.
9. The hardest part about nights are: Being exhausted and just wanting to lay down but having to be up and moving and trying to be happy loving mom.
10. Each day I take 10-12 pills & vitamins. (No comments, please)
11. Regarding alternative treatments: I’m all for them. There are a few I would love to try, but insurance doesn’t necessarily pay for them the same way and I don’t have the extra funds to pay for them on my own.
12. If I had to choose between an invisible illness or visible I would choose: Neither. Let’s be honest, who would choose either one! With the inflammation and stiffness I have I’m often somewhere in between invisible and visible…semi visible…maybe that’s the “best” of both worlds.
13. Regarding working and career: I would love to keep working as long as I can. That’s my plan. But it’s getting harder and harder to work the way I used to, so I’m trying to reinvent myself a little bit. I think I can make a career for myself, it’s just not going to be the one I dreamed of when I was growing up.
14. People would be surprised to know: I am always in pain and always tired. Always. All the acting classes and skills I’ve developed pay off because most people will never know that I absolutely miserable and ready to cry until I’m close to collapsing.
15. The hardest thing to accept about my new reality has been: I can’t force myself to do things. I used to just push and push and push through pain or feeling tired and eventually I would feel better. But that doesn’t happen any more. I just feel worse. The more I push the worse I get.
16. Something I never thought I could do with my illness that I did was: Go to amusement parks with our kids. We had to rent wheelchairs or scooters so I could make it through the day, but I went and had a wonderful time.
17. The commercials about my illness: Are few and far between. Most of them are for drugs and make it sound like it you take a pill you’ll be out working in the garden again a week later. That’s not how it really happens. Especially when you have more than one illness!
18. Something I really miss doing since I was diagnosed is: Acting. I didn’t get to do much in the years before, but I did a little every now and then. My plan was to do more as the kids got older. Now I don’t know that I have the energy or strength to do a play or spend long hours on a set.
19. It was really hard to have to give up: Adventures…little things like bike riding or water slides or park rides or climbing things with the kids…even if I have the energy and mobility to do any of those things on a given day there’s the concern about the impact it would have on me the next day.
20. A new hobby I have taken up since my diagnosis is: I don’t have new hobbies, I just do the old ones more…like crocheting and writing.
21. If I could have one day of feeling normal again I would: Spending it with my girls and my husband having fun and doing all the things most normal moms can do. I would run and jump and go places and try to make up a little for all the things I missed.
22. My illness has taught me: It’s OK to have to stop and sit down or lie down. You aren’t lazy. It’s not you’re fault, it’s just the way your body works.
23. Want to know a secret? One thing people say that gets under my skin is: It’s a tie between “Why don’t you sit down?” (said every 30 seconds – I am capable of standing….most of the time…) and any sort of “That’s no big deal” response when I say something about my 8 year-old having to help me stand, or not being able to climb the stairs, or not being able to button things…I’m freaking 40 years old, not 90! That really is kind of a big deal, I’m not looking for their help or even their sympathy. I would like some sort of acknowledgement that I said something out of the ordinary. “It must be difficult,” or “I’m glad the girls are around to help,” or even the dreaded, “But you look like you’re doing better today.” would be an improvement!
24. But I love it when people: Listen to what I have to say and ask me questions. The vast majority of the time I am honestly not complaining. I don’t talk about every ache and pain and problem. I mean then we’d be there all day. Most of what I’m saying are facts about what my life is like. I don’t sugar coat things, and I don’t have anything to hide or be ashamed of – I’ll answer any question you have (Ok, I am kind of hiding my whole real name because I’m trying to find a job and I don’t want my health to be at the top of the Google search, but that’s a little different). I’m not sad (most of the time), and I’m not going to dump on you. So don’t be afraid to talk to me about it!
25. My favorite motto, scripture, quote that gets me through tough times is: This is just another bump in the road – a friend who passed a way from cancer a few years ago used to say that a lot. I figure if that’s the way she looked at things so can I.
26. When someone is diagnosed I’d like to tell them: You are not alone! There are a lot of us out here like you who listen and empathize and offer advice or a shoulder to cry on if you need one. Don’t give up, we’ll have your back.
27. Something that has surprised me about living with an illness is: That I would sometimes feel lonely in real life but surrounded by friends online. I am incredibly grateful for the people I’ve met through Twitter and some of the message boards I’m on.
From a recent almost no expense paid trip to the ER.
28. The nicest thing someone did for me when I wasn’t feeling well was: Clean my living room – a friend came over to help me update my resume and watch the kids while I worked on a job application and she cleaned the living room and swept the floor. She knew I was tired and it bothered me that I hadn’t done it so she just did while I protested the whole time. It was one of the first times I learned that sometimes you just let people help you.
29. I’m involved with Invisible Illness Week because: I want people to become more aware of invisible illness. More and more people have them, and we’re hiding them. Perceptions can’t change until we can talk about them. Just because I don’t look sick doesn’t mean that I’m not. Just because I’m sick doesn’t mean that I don’t have value.
30. The fact that you read this list makes me feel: Nervous and empowered. I’m worried what you’ll think of me. But, at the same time, what do I have to be ashamed of? This is who I am. This is what I am. Take it or leave it.