Oct 11, 2015
The Invisible project by U.S. Pain Foundation.org
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The Invisible project by U.S. Pain Foundation.org
So, Invisible Illness Awareness Week is ending. A handful of my followers reblogged a handful of my posts/posts I reblogged (thanks to everyone who did, you rock). I didn’t see a single awareness post on my dash all week that wasn’t something one of my mutuals had just reblogged from me. On the plus side, a lot of people with Invisible Illnesses posted their stories and selfies, which is nice. And I think this went better than last year. Also I got up enough courage to say something about it on facebook. So not bad. Not nearly as good as I hoped, but about what I expected.
We tried spoonies. Maybe next year people will pay a bit more attention.
Invisible illness week is September 28 to October 4
I am not defined by my illnesses. #invisiblefight #invisibleillnesses #iiwk15 #invisibleillnessawareness #invisibleillnessawarenessweek
Invisible illness week is September 28 to October 4
It’s Invisible Illness Awareness Week
What’s something that you wish the world could see about your “invisible” illness(es)?
Sapphire’s Invisible Illness 30 Things!
30 Things About My Invisible Illness You May Not Know – 30 Things Meme
1. The illness I live with is: Ehlers-Danlos Syndrome, Fibromyalgia, Irritable Bowel Syndrome, Endometriosis, Dysautonomia, Chronic Migraines, Depression, Anxiety, and the list goes on...
2. I was diagnosed with it in the year: 2010, 2008 (2000 misdiagnosis as JRA), 2000, 2009, 2014, 2010, 2000, 2000...
3. But I had symptoms since: Birth, Puberty, age 8, Puberty, Post-Puberty, Post-Puberty, Puberty, Puberty...
4. The biggest adjustment I’ve had to make is: Accepting limitations.
5. Most people assume: That I'm either "perfectly healthy" or a hypochondriac or making it up for attention :)
6. The hardest part about mornings are: Finding the strength to deal with another day of pain and various symptoms that no one either believes or cares about.
7. My favorite medical TV show is: a solid tie between House and Scrubs
8. A gadget I couldn’t live without is: iPhone, its super cliché but I would lose my shit without my phone. It is my appointment keeper, my symptom tracker, my entertainment when I'm stuck in bed or the bathroom, and my lifeline to the outside world and my support system.
9. The hardest part about nights are: Turning off the anxiety concerning the future, what needs to be done, what didn't get done, whats been done in the past that I'd like to change... You get the picture.
10. Each day I take __ pills & vitamins: Not comfortable disclosing publically.
11. Regarding alternative treatments I : Really don't want to hear how your brother's best friend's aunt's estranged second cousin "has the same issues" and was "magically cured" by alternative XYZ.
12. If I had to choose between an invisible illness or visible I would choose: It would be nice to get some recognition, but I'll stick with my demons.
13. Regarding working and career: I'm disabled, but I'm young, and I refuse to give up my ambitions and dreams because my body has waged war against them. I'm pushing through college, I'm pushing towards grad school, and I'm hoping I can balance my health and being a successful geologist one day.
14. People would be surprised to know: That my daily pain is between a 6-8 depending on how well/how much I've slept and what illness is flaring up. And that is medicated. And not including my current issue with my gallbladder, which bumps it up a lot more.
15. The hardest thing to accept about my new reality has been: That there are VERY very FEW people that actually give a fuck about me now that I'm sick. People say they do, but they're either make excuse or they're just flat out never there. It's very isolating being sick.
16. Something I never thought I could do with my illness that I did was: Honestly I've got nothing, I've remained pretty optimistic (and realistic) in terms of what I can and can't do.
17. The commercials about my illness: Are non-existent for my main one, but mainly centered for old people for the rest.
18. Something I really miss doing since I was diagnosed is: Hanging out with friends without having to worry about my health or having to cancel.
19. It was really hard to have to give up: The concept of total independence. I'm a big girl but I don't know that I'll ever be well enough to not -need- my parents and their help, or a significant other's help.
20. A new hobby I have taken up since my diagnosis is: Coloring!
21. If I could have one day of feeling normal again I would: Go on a road trip with my family without panicking about not having what I need with me.
22. My illness has taught me: To appreciate the little things in life. Some days, when I don't make it much further than my bed, things like a warm cup of tea or witnessing a rainbow through the window will make life not seem so terrible.
23. Want to know a secret? One thing people say that gets under my skin is: ONE?! Ugh, fine. "But at least you don't have cancer." *spontaneously combusts from rage*
24. But I love it when people: Look up my various illnesses, just to know what might be going on. Seriously it takes like five minutes to skim a MayoClinic page or Disorder-Specific-Foundation site, and it means a lot.
25. My favorite motto, scripture, quote that gets me through tough times is: Nothing Worth Having Comes Easy.
26. When someone is diagnosed I’d like to tell them: You're not alone. There are thousands of us out there, you just have to reach out. There are support groups and people that would be more than happy to hold your hand while you adjust and find your way.
27. Something that has surprised me about living with an illness is: Negative - The complete lack of empathy and accessibility in everyday society. Positive - How supportive online communities can be.
28. The nicest thing someone did for me when I wasn’t feeling well was: I honestly can't think of anything. I mean my mom is always really helpful and supportive and does nice mom-things, but I can't think of anyone outside of the family ever doing anything nice for me specifically because I was sick.
29. I’m involved with Invisible Illness Week because: Awareness is key, and I will do just about anything I can to spread awareness.
30. The fact that you read this list makes me feel: Grateful that you took the time, and hopeful that you gained a little insight to what it's like having an invisible illness, at least for me.