30 Things About My Invisible Illness You May Not Know
6/3/2012
Many prominent bloggers were asked to participate in this simple blog post meme to help spread awareness during Invisible Illness Awareness Week (September 11-18th) I think it is important to participate in these things because there is still so much even my closest friends and family do not know. (Even though Invisible Illness week was long ago, why not still participate?)
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Ehlers-Danlos Syndrome type 3, undiagnosed lung problems that we may never figure out but are still trying to treat, Sleep Apnea, Dysautonomia (pending diagnosis)
2. I was diagnosed with it in the year: EDS: May 2011. Sleep apnea: August 2011.
3. But I had symptoms since: I was 13-14ish. It’s hard to pinpoint exactly. They showed up over time, slowly but surely appearing and getting worse.
4. The biggest adjustment I’ve had to make is: changing my daily routine, not pushing myself too hard, and getting used to not being as close with friends because when you don’t go out as much anymore, they forget you.
5. Most people assume: that I am healthy, at first glance. People who don’t know me, or know me but not very well, don’t know how sick I am because it isn’t always so visible.
6. The hardest part about mornings are: getting up. I cannot explain the pain I wake up in every morning, and the terrible fatigue - that’s the thing that really keeps me from moving in the mornings is the fatigue. It’s so bad that it takes me a couple hours of laying awake in bed, then slowly sitting up for a while, then slowly getting up - to start my day. I feel too weak to move. It’s a frustrating and scary feeling.
7. My favorite medical TV show is: I really don’t watch many. I used to enjoy Scrubs a lot - which was really more of a comedy and hardly had to do with medicine at all - the characters just happened to be doctors and nurses.
8. A gadget I couldn’t live without is: My phone, most definitely! Not really medically related.... :P
9. The hardest part about nights are: 2 different things: The first one is when I am so extremely exhausted, but I am in too much pain to fall asleep. It’s not insomnia, there are just nights when I am in too much pain to sleep at all. Those are tough - looking at the clock, counting the hours till I have to get up, cursing my body for being in pain and begging it to let me sleep at least a little so I can (maybe) function like at least 1/10th of a normal person the next day.
The next one is having to sleep with a CPAP device. It’s very, very unpleasant having a mask suctioned to your face, over your nose and mouth, forcing air into your lungs. You feel kind of like you’re suffocating. And trying to sleep on your side (which is a necessity for me) makes the mask leak air and then there’s air blowing into your eye as you’re trying to fall asleep.
10. Each day I take vitamins, frequent painkillers (only over-the-counter because my doctor refuses to prescribe anything more), an inhaled powder steroid for my lungs, and take my blood pressure 3x a day and record it. (and more, depending on the day - other lung medicine + nebulizer for bad lung days, etc.)
11. Regarding alternative treatments I: Tried going to a naturopath in the beginning, she put me on a crazy restrictive diet which made me feel worse and practically starve to death. Tried going to acupuncture - hurt too much to finish the first session. Nothing has worked for me so far, but I’m always willing to try anything natural or medical to help.
12. If I had to choose between an invisible illness or visible I would choose: This is tough. I’m sure if my illnesses were visible, things would be different. I wouldn’t get yelled at by strangers for using my handicap parking pass. People would understand more, and never doubt me when I need help or am feeling really crummy. My friends might even stick around more. But I’ve also gotten used to my illness being invisible, and I like that since it’s such a private thing, I can choose who knows, based on what friends I trust enough to be able to let them know that part of me. It’s not so obvious, so the times I want to be as “normal” as possible, I already look it. But the times when inside, my body is far from normal, people just don’t get it or believe it because I look fine. So that’s a tough question I just can’t answer. Is there a third option, not be sick at all? That’d be nice ;)
13. Regarding working and career: I have left past jobs because of my health problems, and them being too active/stressful to handle. As of right now when I write this, I have a nice little part-time desk job, which is much nicer to my body than my past jobs. However soon I begin college to eventually get my BSN. Being a nurse might be a downright crazy career choice for me, but I’m going to try my very hardest. Who knows, maybe I’ll be the world’s first wheelchair-bound nurse. I strongly believe you can achieve anything if you try hard enough and want it.
14. People would be surprised to know: exactly how hard it is to have EDS and these other conditions, and how hard I really have to work at everything I do. There’s no way to understand unless you have the same conditions, and even then it’s not 100% because symptoms vary.
15. The hardest thing to accept about my new reality has been: The pain, the debilitating fatigue, an uncertain future, knowing it will never go away, and dealing with the worst doctors EVER!
16. Something I never thought I could do with my illness that I did was: Go hiking a little while ago on Jones island. It wasn’t really “hiking” I guess, but going on a very long, very hilly and rugged walk, with Logan. He said it was about 2 miles round trip. Luckily it was on a “good” day. I was so glad to have made it, and as if nature was rewarding me, when we got where we were going we made it just in time to watch the sunset on the beach of this beautiful little island.
17. The commercials about my illness: There are no commercials for my shtuff really, because it’s all rare and partially undiagnosed, and there’s no treatment for it. The only thing that I see commercials for is my sleep apnea. Those are funny commercials to watch because they are always very old people, and usually using those awkward nose-only masks (mine isn’t like that, it covers my nose and mouth). They never show younger people, because younger people normally don’t get sleep apnea. (I have it for different reasons than normal people too, mine is caused by my EDS)
19. It was really hard to have to give up: figure skating, karate... and not being able to do everything I want or need to do every day, because of my pain/fatigue. Also giving up a little bit of my independence has been hard - I don’t like asking for help, but sometimes I need to.
20. A new hobby I have taken up since my diagnosis is: I can’t think of many, but I know as it got harder to be active, I’ve taken up more artsy things than sporty things like I used to like.
21. If I could have one day of feeling normal again I would: Hike to the top of a mountain with Logan, and look out and be able to see all around....
22. My illness has taught me: A lot of things. More compassion, caring, and empathy. It has also taught me, unfortunately, who my real friends and family are. I’ve lost many friends because they either think I’m faking it all just because it’s invisible, or they are too stressed of the thought of a friend being sick. You really find out who truly cares about you.
23. Want to know a secret? One thing people say that gets under my skin is: “But you don’t look sick,” or even on the worst of days, “you look like crap.” OH THANKS!
I also 100% agree with the original author’s response: “I hate when people say “Oh, I know what you have been through”, or “I know how you feel”. The sentence usually starts with those words and ends with a tale of a broken leg, or a bad back, or a particular horrible flu. Try having them all at once (and then some) every day, then tell me you know how I feel.”
24. But I love it when people: Show genuine interest and really want to know about my different health problems, and seem like they sincerely want to help. This is very, very rare.
25. My favorite motto, scripture, quote, etc. is: Hakuna Matata. “No worries”. This moment will pass. Even if it passes onto another particularly unpleasant moment, that’s okay. Everything will be okay in the end.
26. When someone is diagnosed I’d like to tell them: The previous author’s response pretty much sums mine up: “It will be hard, but it will be ok. You know your body best, you need to be your own advocate, and you need to be strong in spirit even if your body is weak.” 100% agree.
28. The nicest thing someone did for me when I wasn’t feeling well was: On Logan’s and my 2 year-anniversary, I had been doing intensive treatment at the hospital and was in a lot of pain and very very tired. That evening, he picked me up from the hospital, took me to his house, and tucked me into a nap with candles and roses all around. I quickly fell into some much-needed sleep and he later woke me up to have my favorite dinner, which he cooked himself, with sparkling cider and more candles and stuff at the table (thank goodness all those candles didn’t set off my lungs, they usually do). I loved the roses and the home-cooked meal, but the best part of all was him knowing exactly what I needed after that painful and exhausting day - sleep. And he let me sleep without getting frustrated that it was our anniversary, and showed me so much love, care, and concern on that day in particular.
30. The fact that you read this list makes me feel: thankful. Cared-about. Hopeful that you got a better understanding from it.
