30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: endometriosis, fibromyalgia, chronic migraines, celiac disease, vulvadynia, orthostatic postural hypotension, adhesion related disorders, chronic pain, chronic fatigue, gastroparesis
2. I was diagnosed with it in the year: I received my first diagnosis in 2003. They kind of snowballed from there!
3. But I had symptoms since: 2003. I got really, really lucky. I had an amazing doctor that had just moved to town that I was referred to when my primary care doctor decided that I had a “female problem.” By the time my pain started to significantly impact daily life, I had surgery and was officially diagnosed within three months. The average length of time it takes to be diagnosed with endo is roughly 7 years.
4. The biggest adjustment I’ve had to make is: Leaving the workforce and pursuing disability. It was honestly the hardest decision I ever made. I felt like such a failure. I had worked my butt off to get my Master’s degree (sometimes working two jobs) to become a hospital chaplain and I loved it. Absolutely loved it but my body didn’t so I tried to stick it out in the job I had been working throughout grad school but it got to the point where I could barely function. I am still in the disability process and my quality of life has continued to declined but at least I have more time with my family.
5. Most people assume: That now that I am not working, my life is a piece of cake and I lay around eating bonbons all day.
6. The hardest part about mornings are: Getting my joints moving! I feel like the Tin Man without his oil can most mornings (especially in cool or rainy weather)
7. My favorite medical TV show is: Untold Stories of the ER (as a chaplain I spent a lot of time in the ER and you wouldn’t believe some of the crazy stuff that takes place in there!)
8. A gadget I couldn’t live without is: My tablet – it helps keep me connected with the outside world but can be easier on the hands than a laptop
9. The hardest part about nights are: Getting comfortable temperature wise! Many nights, I need my heated blanket for my joint pain or allodynia but I also get terrible night sweats so I end up sleeping in the least amount of clothes possible to make being able to tolerate the heated throw possible.
10. Each day I take __ pills & vitamins. (No comments, please) Somewhere between 15-18
11. Regarding alternative treatments I: have tried just about everything under the sun. Physical therapy, chiropractors, herbs, dietary changes, etc.
12. If I had to choose between an invisible illness or visible I would choose: My illness is becoming more and more visible as I have had to start using mobility aids more frequently and this summer I decided “what the heck” and started wearing a two piece bathing suit to the pool and the beach, so I’ve gotten a lot of strange stares and whispers. Add in the purple hair and our transracial family, we’ve grown accustomed to it.
13. Regarding working and career: I’m in the final stages of the disability process (I actually have my hearing date! Hallelujah!) but I am also coming to a place where I am redefining what career means to my life personally and how I want this blog to function and where I want it to go in the future so I’ve got a lot rolling around in my brain on that one.
14. People would be surprised to know: That I still love to ride roller coasters. I cannot ride them as many times in a row as I used to but there is nothing better than a good coaster!
15. The hardest thing to accept about my new reality has been: Learning to say no and learning how to be more flexible in scheduling. I am a creature that thrives in structure with a plan and lists in hand and I have always had a people-pleaser, “almost type A” personality so letting go of that and most importantly learning that letting go of that is not equivalent to failure has been a hard hurdle to climb over.
16. Something I never thought I could do with my illness that I did was: Meet so many amazing people all over the world. I have developed some of the most deep and meaningful relationships in my life after being diagnosed and being a part of various support groups or activist groups. My life has been truly changed by some of the amazing people I have met (including all of you guys!).
17. The commercials about my illness: make me want to scream. No one wants to have a happy period. I don’t care if you have endo or not. You do not want to go down a water slide or turn flips off a diving board in a white bikini when Aunt Flo arrives for her monthly visit. Get real.
18. Something I really miss doing since I was diagnosed is: running. I miss being able to lace up my sneakers and pounding the pavement for a couple miles. I got the best thinking and praying done that way. Maybe I can find a way to ease into doing a little running. I may not be able to go back to 5-8 miles but maybe I can shoot for 1 or 2.
19. It was really hard to have to give up: Gluten. Well, it has gotten easier over time and even living in a tiny town, there are now so many more gluten-free options available so its not a big of a change as it would have been if I had been diagnosed even ten years ago. I just really miss Krispy Kreme donuts, Wendy’s Spicy Chicken Sandwich, and Pizza Hut breadsticks.
20. A new hobby I have taken up since my diagnosis is: Blogging/writing. I always liked writing and was rather good at it but I never thought that I would be pursuing it as a career and even considering writing a book!
21. If I could have one day of feeling normal again I would: Eat a lot of gluten and head to Cedar Point and ride as many roller coaster as possible.
22. My illness has taught me: That I am a total badass and so much stronger that I ever thought I could be. I also learned that Jesus is a total badass and the depths of his love, mercy, grace, peace, comfort, wisdom, and fight surpass all understanding.
23. Want to know a secret? One thing people say that gets under my skin is: “I heard about this juice/supplement . . . . ”
24. But I love it when people: “How can I pray for you?”
25. My favorite motto, scripture, quote that gets me through tough times is: “When darkness comes, I’ll light the night with stars” ~ Skillet, “Whispers In The Dark” and “They can’t keep their chains on me when the Truth has set me free” ~ Skillet, “Not Gonna Die”
26. When someone is diagnosed I’d like to tell them: That I am sorry, that I will be praying for them, and how much I recommend researching and finding a support group to be a part of.It makes an absolute world of difference to feel like you have a place where you belong with people who can actually say “I understand” and mean it.
27. Something that has surprised me about living with an illness is: How much stronger it has made my faith. I had to do a lot of wrestling but it was through that at wrestling that I truly discovered not only what I believed but why I believed it. It was through the hardship that God’s character was revealed to me in such a deep and meaningful way and I wouldn’t trade that for anything.
28. The nicest thing someone did for me when I wasn’t feeling well was: My husband and mom have spent so, so many nights in those hellish hospital chairs to make sure that I have never had to spent the night alone in the hospital even when I told them I would be ok and encouraged them to go home. My dad always researches the best gluten-free places to eat whenever we travel somewhere and always secretly (or not so secretly) researches any new diagnoses or treatments to make sure I have the best care possible. I may be almost in my mid-30s (YIKES) but I always feel like I’m still my parents baby girl and my husband makes me feel so safe and protected.
29. I’m involved with Invisible Illness Week because: every voice matters. It is crucial for awareness, education, and resources to be shared about invisible illnesses that are affecting millions of lives worldwide and every single voice makes a difference.
30. The fact that you read this list makes me feel: like a part of something special.
This post is written in celebration of the 2015 Invisible Illness Awareness Week. You can also check out my 30 Things You May Not Know About My Invisible Illness post from the 2013 Invisible Illness Awareness Week.