It’s INVISIBLE ILLNESS AWARENESS WEEK! So here are some facts about mine.
It’s a bit long, but it would mean a lot to me if you read it. I think it’s really important to have an idea of what being sick/disabled can look like. There are so many misconceptions about what the life of a person like me is like, or even that we exist at all, so while this is just one perspective I hope it helps expand your idea of what is possible under those labels. I know I had a very narrow and totally wrong view myself before I got sick. So yeah please read, for me and others you know<3
PS: if this is too long, the 1 piece of advice I would give is just BELIEVE what people tell you, don’t think you can determine whether medical info they give makes sense or if they are faking/over exaggerating. Know you probably can’t tell someone’s medical status just by looking or watching them - people are complicated, symptoms vary, a disease is weird and can effect people in unexpected ways
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Ehlers Danlos Syndrome (EDS—a genetic connective tissue disease), post concussion syndrome, and several secondary conditions to EDS, including dysautonomia/POTS, cervical instability, and (suspected) mast cell activation syndrome
2. I was diagnosed with it in the year: Misdiagnosed with fibro in 2011, the rest came in 2013-14
3. But I had symptoms since: I started having minor joint issues in 2005, but major problems started in 2010-11
4. The biggest adjustment I’ve had to make is: Oh wow. I had to come up with an entirely different identity and concept for what a good life could look like. I love my life now, and I’m really happy, but it took a while to get there. I used to be an incredibly ambitious person, who was used to performing at a really high level and being busy 24/7. I’ve needed to slow it down & reevaluate what’s really important in life. I think I would have been horrified if you’d told me 10 years ago I would have dropped out of college, but I’m actually totally I’m at peace with where I am. I’ve done a lot of cool things since I’ve been home
5. Most people assume: that my life is tragic …. that one is hard to respond to. They seem so sad when they find out the details, but honestly in a big picture way life is good
6. The hardest part about mornings is: I often feel really sick in the morning because of dysautonomia. So I’ll be faint, nauseous, dizzy … just not at my best!
7. My favorite medical TV show is: Mystery diagnosis! Which I mostly watched while I was still, indeed, a mystery
8. A gadget I couldn’t live without is: My phone/laptop. Because I’m home a lot they are really my lifeline to the world
9. The hardest part about nights is: Probably needing to sleep in a neck brace, especially now that its giving my jaw issues. But it’s so much better than NOT sleeping in a neck brace is for me at this point, so I’ll take it:p
10. Each day I take: I take 14 prescription and over the counter medications, and about 10 more supplements. Almost all of them are considered minor, safe medications (like 5 are for allergies), but still that number adds up!
11. Regarding alternative treatments I: Wish I had time/money for more of them. Massage, acupuncture, and float therapy have all been helpful for pain management
12. If I had to choose between an invisible illness or visible I would choose: I think invisible is easier in many ways ….although I sometimes blur the edges with all the braces I use
13. Regarding working and career: I’m really lucky to have a fantastic part time job I can do from home. No idea what the future holds in this department … a lot of careers I might have chosen seem tricky bc they are too demanding, or the schooling is. So we’ll see
15. The hardest thing to accept about my new reality has been: Sometimes I feel sad about the lost “potential,” and honestly I still don’t like thinking about the kind of things people expected from me when I was younger. I guess I have a small degree of sadness that I’ll never work at a particle accelerator or be a big name in my field or anything, but honestly I might be happier this way:)Definitely less stressed!
16. Something I never thought I could do with my illness that I did was: Be happy! Or even find a life worth living. But I’m actually happier now than I was before I got sick
17. The commercials about my illness: I haven’t seen any yet. I get a couple Facebook ads suggesting I buy electrolyte drinks, but that’s about it
18. Something I really miss doing since I was diagnosed is: I just miss being able to be busy all day. I have so many things I want to do and love doing, and I have so little time for all of them!
19. It was really hard to have to give up: Ballet and flexibility training. I miss stretching so much
20. A new hobby I have taken up since my diagnosis is: running my blogs! I’ve found this really fulfilling and I never would have gotten into this if I hadn’t gotten sick. Its really great to be able to help people, and to realize that something that should exist doesn’t, and then make it happen.
21. If I could have one day of feeling normal again I would: I’d do something spontaneous and enjoy how easy things can be. Go hiking and camping, go on some crazy road trip, do a marathon day of exploring a city, know i can sleep in a car or on a floor and not be too banged up, not need to worry about bringing all the meds and stuff I need, etc
23. Want to know a secret? One thing people say that gets under my skin is: There isn’t anything that really bothers me - for the most part everyone has been great. The unwanted pity thing is awkward, but doesn’t really get me mad. Honestly, my biggest problem has been getting people to say anything at all! I’ve gotten a lot of “sorry I disappeared, I didn’t know what to say” from people and I don’t want to make it worse!
24. But I love it when people: Notice when I can’t do something that the group is doing, and sit it out with me, or work to include me. Big family events and parties and stuff can be really sad when no one notices I can’t participate! Other than that, just stay in my life, & accept what I tell them as true. Also people who ask respectful questions:)
25. My favorite motto, scripture, quote that gets me through tough times is: even bad days have 24 hours
26. When someone is diagnosed I’d like to tell them: 1. it is possible to have a good life with chronic illness 2. bad days don’t last forever 3. Your illness is valid, you belong in the chronic illness community, and you aren’t faking it even when you worry you are (almost everyone I know with chronic illness feels this way, I blame society) 4. be sympathetic to yourself - its ok to grieve and be sad about this 5. i believe in you
27. Something that has surprised me about living with an illness is: How boring and mundane it is! even big dramatic events are full of so much waiting and mundanity. Filling out paperwork in the ER and waiting for hours, making 7 phone calls to try and track down important test results, the monotony of managing medications, appointments, insurance, etc … idk I used to think that having a scary illness would make life more exciting or something, but it doesn’t feel that way from the inside
28. The nicest thing someone did for me when I wasn’t feeling well was: Oh gosh my family has done SO much for me. My ex really went above and beyond, and I’m forever grateful to her for that. And a major shoutout to all my chronic illness friends who have answered all my medical questions and helped me understand and cope with scary new test results
29. I’m involved with Invisible Illness Week because: there are SO many misconceptions about illness and disability, including the perception that you can tell if someone is sick/disabled by the way they look or act!
30. The fact that you read this list makes me feel: happy yay thanks for listening:)
PS - all photos were taken in the last 6 months, so during a time where I was already quite limited and dealing with a variety of chronic illnesses & symptoms. Even though I’ve seen some improvements in the last year, I’m still far to sick to manage school or a full time job and I have whole bunch of health issues I need to balance on a daily basis