invisible illnessTo help promote Invisible Illness Week I am sharing the MeMe:

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Internal Disc Disruption/Derangement (IDD)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: 2008
4. The biggest adjustment I’ve had to make is: Not being able to participate in even the most normal day-to-day activities as I am unable to sit, stand, walk etc. the majority of the time.
5. Most people assume: I look great so I must not be as disabled as I am.
6. The hardest part about mornings are: Waking up and realizing a have another day to persevere through.
7. My favorite medical TV show is: I don’t have one.
8. A gadget I couldn’t live without is: my camera.
9. The hardest part about nights are: waking up from dreams in which my body is working normally.
10. Each day I take __ pills & vitamins. (No comments, please) A couple of non-narcotic meds and many vitamins.
11. Regarding alternative treatments I: have spent thousands of dollars trying everything with no results…acupuncture, acupressure, cranio-sacral, Reiki, healing touch, plasma injections (that athletes use), prolotherapy, body-mind therapies, visualization, etc.
12. If I had to choose between an invisible illness or visible I would choose: hard to choose…I am grateful that I look “normal” but daily I wish I had a way of showing people what I am truly dealing with each and every second of the day despite my “normal appearance”.
13. Regarding working and career: So sad to know that I will never have either again so I have to find purpose some other way which is hard to do when I spend 90% of my day laying horizontally.
14. People would be surprised to know: that to get anywhere I usually have to lay horizontally in the back seat of my car and have someone drive me.  
15. The hardest thing to accept about my new reality has been: I may be this disabled forever and I am only 39.
16. Something I never thought I could do with my illness that I did was: keep on persevering through it all.
17. The commercials about my illness: there aren’t any.
18. Something I really miss doing since I was diagnosed is: sitting…to drive, to eat my meals, to watch a play, to fly, to watch a movie, to watch my nephew’s play sports, etc.
19. It was really hard to have to give up: the reality that I will never travel by plane ever again.
20. A new hobby I have taken up since my diagnosis is: blogging.
21. If I could have one day of feeling normal again I would: hop on a plane to Kenya…a lifelong dream.
22. My illness has taught me: life is not fair, good health should be cherished every single moment, nothing should be taken for granted.
23. Want to know a secret? One thing people say that gets under my skin is: “have you tried…”
24. But I love it when people: say “Wow, you are so strong to handle how you have to live your life. I bet not many people realize how hard it must be.”
25. My favorite motto, scripture, quote that gets me through tough times is: “At the end of the day, we can endure much more than we think we can.” – Frida Kahlo
26. When someone is diagnosed I’d like to tell them: stay strong, no matter how alone you feel, you are not. 
27. Something that has surprised me about living with an illness is: how there can be so few medical solutions or answers to my situation and so many other people’s. 
28. The nicest thing someone did for me when I wasn’t feeling well was: My Mom has repeatedly dropped everything to take care of me and comfort me.
29. I’m involved with Invisible Illness Week because: I really want people to learn not to make any assumptions about someone’s health based on their external appearance.
30. The fact that you read this list makes me feel: happy.

Peace and love,
Stephanie

8 comments on “30 Things About my Invisible Illness You May Not Know”

  1. Stephanie, thank you for sharing these 30 things about your invisible illness. I was very touched reading this, and I can especially relate to the one where you have a dream and you feel NORMAL and yet wake up to the same reality of having symptoms and limitations. Yes, stay strong. It may not always seem like much, but just standing up … though not always literally 🙁 .. for more awareness and compassion and support for these kinds of invisible conditions is a brave move .. and in the end is making a difference in the world. Thanks for sharing.

  2. I think you just made me feel better about my psoriatic arthritis, my fractured hip that never healed properly and my back issues. I have had a hard time explaining to people why i cant do many things, especially since i look normal. I have many people assume I am faking it half the time.

  3. I am happy to hear that I may have made you feel a bit better. I agree it is so hard and tiring to try and explain to people why you can’t do things. I know many assume because of my young age, tanned skin and put-together appearance that I am faking too. That is why we have to band together and share with others in the same situation. We know that what we are experiencing is real. After years of living with my condition, at least I know those very close to me know it is real but on a daily basis I am sure my neighbours, ex-coworkers, strangers in parking lots all think I am not “disabled”. It requires daily practice to just let that go…with practice it seems to come. I realize I cannot change those people’s thoughts necessarily but I can change mine 🙂 xo

  4. Thank you for sharing your invisible illness story. I’ve had chronic pain for 10+ years from multiple causes and can definitely relate. This post helped me to not feel alone in my struggle. I hope it will also help others without chronic illness or pain understand a little more and judge a little less. I agree, “looking normal” comes at a price: we don’t always get the help we need. The last couple months I’ve had to use a walker to recover from surgery. People are so much more helpful now that they can “see” I have pain…yet, I had worse pain before the walker! Definitely shows those of us with invisible illness or chronic pain that we need to speak up and ask for what we need.

    • Thanks for stopping by my blog and reading my story. I related so much to your walker experience as I used a cane for a couple of days and wow did people ever respond, both the people in my life and strangers! Thanks again for sharing and I wish you all the best. xo

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