30 Things You May Not Know About My Invisible Illness

Invisible Illness Awareness Week is coming up--September 28-October 4, 2015. So in preparation, I thought I would participate in the Invisible Awareness Meme Project. Here are a few things you may not know about my invisible illness and what life is like with it.

1. The illness I live with is: Ankylosing Spondylitis, but you can just call it "AS," because that's much less of a tongue-twister.
2. I was diagnosed with it in the year: That's a hard question.  My AS diagnosis came slowly over the course of a few years, after being diagnosed more generally with "seronegative polyarthritis" and then "seronegative spondylitis."
3. But I had symptoms since: I first "got sick" in 2009 as a 20 year old and junior in college. It happened very suddenly and intensely, almost overnight.
4. The biggest adjustment I’ve had to make is: mentally adjusting my expectations for myself and my life
5. Most people assume: that I am not "sick" or in as much pain as I am as often as I am. But, since it's an assumption, I don't really know!
6. The hardest part about mornings are: PAIN. I have morning stiffness daily, which is akin to waking up feeling like a tin-man who needs all of his joints oiled. Because of this, I have to take mornings very slowly. The positive part is that my husband brings me coffee after I hobble to the couch. :)
7. My favorite medical TV show is: Grey's Anatomy. But I used to love House (because I'm used to being a medical anomaly/not fitting in medical boxes.).
8. A gadget I couldn’t live without is: a toss-up between my dolly to carry up groceries from the parking garage and my inflatable seat pad, a thoughtful gift my older brother that I originally was offended by (ha!)
9. The hardest part about nights are: how long it takes to fall asleep partly from my mind racing and mostly from joint discomfort
10. Each day I take 15 pills & vitamins. This isn't counting the medicine I get by IV every four weeks or the pills I take once a week! (No comments, please) (Adding it up even surprises me! And to think that prior to getting sick I took no medicine daily!)
11. Regarding alternative treatments I: have tried several, including diets, homeopathic remedies, bleh. I honestly get tired of people telling me to try "one more thing." Some things are worth trying though. And yoga, counseling, and eating well are excellent life practices for everyone.
12. If I had to choose between an invisible illness or visible I would choose: Honestly, probably a visible one. In many ways, it would make the emotional pain of my disease lighter. But the positivist in me wants to say "invisible" because of all of the ways having a disease people can't see has made me have to mature emotionally and spiritually.
13. Regarding working and career: Work is a giftSometimes disease has significantly limited my ability to work, and so when I am able to work, I am so thankful to be able to. Disease has also shaped my sense of calling and career purpose, making me want to become a counselor to help others experiencing pain like I have.
14. People would be surprised to know: That I am always in some level of physical pain or discomfort. That I undergo chemotherapy infusions every four weeks. Or that some months I at the doctor's office/hospital 3-4 days out of the week. (This has improved greatly lately!!)
15. The hardest thing to accept about my new reality has been: how it impacts my marriage, friendships, and sense of self. It's like there is the self I know and then there is the self I have to experience when in immense pain or very sick, and sometimes she's not so happy or energetic.
16. Something I never thought I could do with my illness that I did was: finish college on time! I got sick at the beginning of my 2nd semester of junior year. By God's grace and the support of professors I graduated on time and summa cum laude (with highest honors). I'm still inspired by that experience. It pushes me to remember that I can do what is in front of me with God's help.
17. The commercials about my illness: PISS me off! Think Humira, Enbrel, Phil Mikelson (sp?). They all make it look like they are miracle drugs. And it's simply NOT true. They also make it sound like taking the drug is not a big deal, but they actually suppress your immune system and carry major risks of developing cancers, side effects, etc. It's not all smiles and happy families when the drugs make you get infections an average of 8 times a year.
18. Something I really miss doing since I was diagnosed is: rock climbing and running.
19. It was really hard to have to give up: having as full of a schedule as I used to
20. A new hobby I have taken up since my diagnosis is: watching TV series. I used to judge people who watch a lot of TV...and then I got sick. When you are in raging pain for long periods of time, sometimes TV is the only thing that can adequately distract you.
21. If I could have one day of feeling normal again I would: Wow, that question brings tears to my eyes. I would go on a hike at sunrise somewhere with a vista and read some Scripture outside, followed by rock climbing with friends. And then I would go home and make a huge dinner for my friends and sit outside eating and talking all evening long. And I would have energy for it all.
22. My illness has taught me: that suffering and pain can mysteriously help us know God and experience deeper joy in life, because God himself knew and REDEEMED suffering in Jesus and one day because of his work, I will have a body that is free from pain and a heart that no longer feels angst but is overcome with endless joy.
23. Want to know a secret? One thing people say that gets under my skin is: "How are you feeling?" as a greeting when they see me. Ugh. I want to be known as more than my illness. Though your statement is well-intended, it makes me feel like less of a person. "How are you?" would be much better.
24. But I love it when people: can tell I'm not feeling well and say something kind... or when they simply listen at the times when I am willing to tell them about how I'm feeling or what I'm experiencing disease-wise.
25. My favorite motto, scripture, quote that gets me through tough times is: "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26
26. When someone is diagnosed I’d like to tell them: First I'd like to validate their experience, because I know the diagnosis process can be incredibly scary and difficult. Then I'd tell them that though it might not feel like it, they are not alone in suffering with a disease. I would share about my experience if it seemed like that would be helpful to them.
27. Something that has surprised me about living with an illness is: How I have to grieve over and over again. Grieving over the effects of illness happens suddenly out of nowhere. Living with a severe, active disease is emotionally difficult.
28. The nicest thing someone did for me when I wasn’t feeling well was: came over to my house, sat on my couch, and let me cry in their arms. But so many others have brought me meals, occasionally washed my dishes, or sat with me during treatments. This was for my sister's illness not my own, but one young man brought my family flowers in the hospital just a day after his own mother had passed in that same hospital. That probably was the most amazing display of kindness I have ever experienced.
29. I’m involved with Invisible Illness Week because: Living with an invisible illness is really hard. People need to better understand the experience of the millions of people affected by diseases like mine that you can't see at the first glance. When you better understand our experiences, you can live with greater empathy.
30. The fact that you read this list makes me feel: incredibly loved.

If you are reading this and have an invisible illness, I would love to hear from you! Together we can create a more understanding world. You can access the Invisible Awareness Week meme project here and share it on your facebook page or blog!