Invisible Illness Awareness Week
Even when we have known a person for decades there are still things we can discover about their daily life with chronic illness. And when we learn a bit more about what something is they love to hear, or what their morning may be like, it can help us be more compassionate to all of those around us who are suffering in ways we may not have noticed.
You never know what you may have in common with others around you.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Ehlers-Danlos Syndrome, Chiari Malformation, Syringomyelia
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: I was a small child
4. The biggest adjustment I’ve had to make is: Realizing that I am always going to have to struggle with everyday tasks that most people don’t even give any thought to
5. Most people assume: That there is nothing wrong with me because, unless I am using a cane or they happen to see me in my home environment, I don’t “look” sick
6. The hardest part about mornings are: laying awake in bed for up to 3 hours on bad days, waiting for the meds to take effect so I can even move enough to sit up
7. My favorite medical TV show is: Greys Anatomy, only because I like the storyline… and before my first brain surgery, I was in Nursing School so I have a strong desire to lose myself in the show
8. A gadget I couldn’t live without is: my cane, my ASV (breathing) machine, and my grabber
9. The hardest part about nights are: Insomnia, and being alone…
10. Each day I take 21 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried acupuncture but it was way too painful 😦
12. If I had to choose between an invisible illness or visible I would choose: one with a cure!
13. Regarding working and career: Those dreams are now dead and gone
14. People would be surprised to know: I used to be very successful
15. The hardest thing to accept about my new reality has been: there are so many things I love to do that I will never experience again
16. Something I never thought I could do with my illness that I did was: help others just by understanding what they are going through when the rest of their world is clueless
17. The commercials about my illness: do not exist
18. Something I really miss doing since I was diagnosed is: metal detecting, riding motorcycles, hiking, camping, playing the guitar and keyboard… and a vast number of other things
19. It was really hard to have to give up: my marriage
20. A new hobby I have taken up since my diagnosis is: learning all I can about my medical conditions
21. If I could have one day of feeling normal again I would: do everything I can’t do anymore, as much as could possibly fit into 1 day
22. My illness has taught me: patience
23. Want to know a secret? One thing people say that gets under my skin is: God only gives us what we can handle
24. But I love it when people: are interested enough to research my conditions on their own
25. My favorite motto, scripture, quote that gets me through tough times is: I really don’t have one…
26. When someone is diagnosed I’d like to tell them: You are not alone. It feels like it a lot of the time, but those are the times when you reach out to me or someone else you know who has the same condition
27. Something that has surprised me about living with an illness is: how many different ways there are to figure out how to do simple tasks
28. The nicest thing someone did for me when I wasn’t feeling well was: helped me bathe, fed me, carried me to bed
29. I’m involved with Invisible Illness Week because: I want as many people as possible to be aware. Just because we may look just fine on the outside doesn’t mean much because on the inside we are dealing with things an average healthy person can not even begin to wrap their mind around
30. The fact that you read this makes me feel: grateful, appreciative and happy
Life Through the Eyes of a "Cat" 
September 13th, 2013 at 11:37 am
I read.
I had to google it.
I worked with a lady in her thirties who had to walk with a cane. She told me the name of her disease, and I’m ashamed to say that I do not remember the name of it. She reached a point where she had to leave work. It was degenerative, and it was in her muscles and she was in pain…often. This sounds familiar, and I am wondering if that’s what she had…and I feel really bad for not remembering. She told me. She worked her ass off…worked longer hours than everybody. She worked until one day it got to be too much for her, and she left the company. She moved back with her folks, across the country. Whether it was the same disease or not, I should remember things like this.
September 13th, 2013 at 12:43 pm
Don’t feel bad for not remembering. There are so many conditions with similar symptoms and many of them are hard to pronounce. I also have secondary conditions such as Fibromyalgia and different types of arthritis.
The fact that you remember that she had an illness and you noticed that she was a hard worker speaks volumes more than just knowing which health problem ailed her.
Our illnesses do not define us, our personalities and characters do 🙂
Thank you for reading and taking the time to comment.
Hugs, Kat
September 13th, 2013 at 3:58 pm
Hi Kat, thanks for sharing your heart with us. I have cfids/me and Fibro . I am mostly in bed,but have a family and 4 sweet cats to keep me company and make me laugh. : ). I hope you get lots of comments. It is so helpful to read about others who go through so much too, just with different illnesses. I think you would have made a great nurse,but even now, you are reaching out to help others feel better about themselves,and that is a gift that you are sharing,thank you and God bless you.
Love and Blessings, Jill xoxo
September 15th, 2013 at 4:56 am
Such an honest post 🙂 do you mostly find it a positive thing when people can’t see yr illness? I can imagine it’s annoying as well at times when people don’t see it and therefore don’t keep it in mind!
September 15th, 2013 at 7:55 am
I like that I can hide it well and pretend I’m normal on good days, but the problem is the people who only see me on good days sometimes make remarks about how I’m not really ill or that I don’t need some of the assistance I have, such as a disabled placard for parking.
September 15th, 2013 at 8:10 am
Bah probably, I can totally see that happening. Pulling a brave face on the good times doesn’t mean you’re well behind closed doors.
October 12th, 2013 at 7:46 am
[…] 30 Things About My Invisible Illness You May Not Know. […]
October 12th, 2013 at 8:23 am
Powerful stuff! Ive just been diagnosed with this condition, everyday tasks are increasingly becoming difficult, cant imagine what you must be going through. One thing im going to try is Juice Plus, im going to blog about it, I hope you follow me and monitor my progress, im trying to keep active and not let this condition bog me down. positive thinking right?! 🙂
thankyou again for sharing your story. Tom.
October 12th, 2013 at 8:38 am
Reblogged this on HypermobileHobbit and commented:
I am planning to add my own answers to these questions, but this blog illustrates the feeling of living with a complex and chronic condition.
October 12th, 2013 at 8:54 am
I’ve just been diagnosed with EDS HM after years of struggling, it’s not as severe as some people have it but some days I can’t get out of bed or I have to use my cane. Ive just had to give up a dream job because I am no longer well enough to work and have hit that grieving stage of losing the future and career I wanted. It’s nice to know we are not alone but also it’s painful to hear about peoples suffering. Thank you for this post.
November 3rd, 2013 at 6:08 pm
Greetings furless One. Thanks fur stopping by my blog!
I am sorry to learn that you have such s disabling condition… I’ve never heard of it before, and I’m sure the human hasn’t either.
The human likes reading your posts. She’s glad you are blogging about it because it will help and enlighten others and it’s good fur you too.
Purrs and tunas to you!
Shrimp
November 3rd, 2013 at 6:36 pm
Thanks, Shrimp. I’m human to Addycat, perhaps you saw a picture or two of her on my blog?
I’m sure the two of you would get along great. She and I read some of your posts together last night. Addycat thinks your blog is purrfect!
=^..^=
November 4th, 2013 at 12:06 pm
Well greetings Addycat and furless One! Nice to meet you! Glad you like my blog! Haven’t seem pictures of Addycat yet… But will be on the Lookout fur them!
Shrimp