30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic Lyme disease with the co-infections Babesia and Ehrlichia
2. I was diagnosed with it in the year: November 2008
3. But I had symptoms since: around 1996
4. The biggest adjustment I’ve had to make is: losing everything that matters to me. I've lost the ability to care for myself and thus have been unable to work, attend school, or be involved with volunteering/activism.
5. Most people assume: The disease isn't as serious as I or my doctors think. My family and friends don't want to believe that a disease from a tick bite could cause this much damage (especially since a doctor took it off me and said nothing of lyme disease) while the doctors on the board of IDSA have too much money and personal credibility tied to the idea that chronic lyme disease doesn't exist.
6. The hardest part about mornings are: feeling like I haven't slept at all and adjusting yet again to the intense, relentless pain throughout my body. There is a widespread dull ache from my eyes to my fingers and toes. Where there isn't a dull pain, there exists a sharp stabbing pain and/or a burning pain that gotten so much worse since starting Mepron to kill the Babesia. After accepting the fact that I need to get up is deciding whether I have the strength to stand to take a shower or the ability to walk downstairs and eat breakfast.
7. My favorite medical TV show is: I don't watch much tv, but I used to watch House. Though I'm grateful for Mystery Diagnosis which has a story about lyme disease that helped me figure out that fibromyalgia wasn't a diagnosis that fit my symptoms
8. A gadget I couldn’t live without is: my laptop. It's my connection to the outside world. Since I'm losing my vision, it has been helpful to be able to download e-books for the bigger font or listen to lectures/debates on interesting topics. And as a far left feminist atheist from a fundamentalist Christian Republican background, it is comforting to find communities online.
9. The hardest part about nights is: getting to sleep. It is really hard to relax and stay asleep with such overwhelming pain. I've cried myself to sleep more times than I could ever count...
10. Each day I take three handfuls of pills & vitamins, plus two tablespoons of the yellow-paint-look-alike Mepron.
11. Regarding alternative treatments I: know some people claim that a few natural South American herbs can cure lyme disease in early stages. But after being diagnosed in a dire stage, alternative remedies were too much of a risk to waste precious time on.
12. If I had to choose between an invisible illness or visible I would choose: visible because I can look pretty normal most of the time, even when I'm feeling lousy.
13. Regarding working and career: I wish I had the ability to have either. But hopefully that will happen someday.
14. People would be surprised to know: I'm scared for my friends to see me during my bad days. With lyme spread to my brain and affecting my heart, I'd hate for them to see me collapse, have a seizure or a heart attack. I'd rather wait for the days when I'm better at hiding the twitches or able to smile through the pain.
15. The hardest thing to accept about my new reality has been: having to admit I can't push myself to do what I want to and I actually have to ask for help sometimes.
16. Something I never thought I could do with my illness that I did was: I don't know. It may be to early to say. Perhaps as I get further along in treatment, I could go back and actually graduate college.
17. The commercials about my illness: what commercials? No one talks about it. A number of doctors don't even believe in it. I saw the best specialists in Oregon who told me I must have something else despite my extremely rare positive test results. The only way I learned about the disease and to find a lyme-literate doctor was through internet communities with other patients and survivors.
18. Something I really miss doing since I was diagnosed is: having any kind of an active life. I had to give up sports in high school and excess walking in college. I'd give anything to go for a run or shoot some hoops. It's an odd thing to feel trapped in your own body.
19. It was really hard to have to give up: being a student. I really enjoyed my classes and extra-curriculars. Going into my senior year was such an exciting time for me that I didn't want to let go.
20. A new hobby I have taken up since my diagnosis is: reading non-school things. It has been nice to branch out and read about more about racism/white privilege, philosophy, ableism, atheism, and controversial topics in science. Maybe I'll eventually branch out even more and read some fiction...
21. If I could have one day of feeling normal again I would: Go do something fun with friends! It would be great to be able to do something without worrying about how long my body will hold up.
22. My illness has taught me: Life is short. Live for today because there is no guarantee for tomorrow. As much as I was living my life hoping it would be better in the future, I'm learning to enjoy it now.
23. Want to know a secret? I'm tired of hearing that if I just believed in God, he could heal me without this treatment.
24. But I love it when people: come hang out with me. It's a lonely time in my life.
25. My favorite motto, scripture, quote that gets me through tough times is: I've yet to find anything specific. But watching Gilmore Girls or taking a hot bath can be very therapeutic.
26. When someone is diagnosed I’d like to tell them: You can survive this. In the times that you are consumed with pain and wondering how you can continue to fight, know that there are communities of us who've been there or are currently in the same situation. Don't be afraid to seek support in and out of the lyme community.
27. Something that has surprised me about living with an illness is: there are limits of perseverance. I really believed that my desire to finish school and stay in Corvallis could push my body to maintain function. It really depressed me that sheer will couldn't make bum legs walk. As crazy as it seems, I felt like such a failure.
28. The nicest thing someone did for me when I wasn’t feeling well was: bringing over good food and movies or taking me on a drive to the coast
29. I’m involved with Invisible Illness Week because: I want to raise awareness about those of us who suffer and help those who may feel alone.
30. The fact that you read this list makes me feel: that you love me enough to learn more about my struggles.