“30 Things About My Invisible Illness You May Not Know”

The month of September is Invisible Illness Awareness Month and one week out of the month is Invisible Illness Awareness Week! Yes, I am aware it is now November, but I wanted to share this with you! We can spread awareness anytime of the year! Due to my invisible illnesses, I was not able to write this post, until now!

I learned about answering “30 Things About My Invisible Illness You May Not Know” through Christine Miserandino, the founder of But You Don’t Look Sick and The Spoon Theory!

Here are 30 things you may not know about MY Invisible Illness:

1. The illness I live with is: Lyme disease (and many more)

2. I was diagnosed with it in the year: 2002 (when I was 12) & was re-infected around 2008 (when I was 18 years old)

3. But I had symptoms since: Age 9

4. The biggest adjustment I’ve had to make is: Accepting and living with all the other illnesses/conditions I’ve developed from living with Lyme disease- worst of all my sleep disorders

5. Most people assume: You take antibiotics for a month and you’re fine. No one considers what happens when you have lived years with an infection in your body without it being treated- and that doesn’t mean more antibiotics will get rid of it either

6. The hardest part about mornings are: Staying awake/getting out of bed

7. My favorite medical TV show is: I don’t really have one, but I’d have to say House- because he can fix everything; Law and Order SVU is one of my favorite shows; even though it’s not considered a medical show, I love studying abnormal psychology, which is a big part of the show!

8. A gadget I couldn’t live without is: My nutribullet! I’m never hungry (as a side-effect of the medicine I take to stay awake) so breakfast, lunch and snacks throughout the day are usually in liquid form! Also my HEPA filter!!

9. The hardest part about nights are: Falling asleep, staying asleep; but more the fact that I’m not a normal 24-year old. I used to go out on weekends, now if I make it out to run errands is an accomplishment.

10. Each day I take: I’ve been able to cut down and only be on 4 prescriptions meds (at one point I was taking about 15), I take a lot of herbs/supplements/vitamins

11. Regarding alternative treatments I: I am a huge believer of alternative medicine, when it’s done right. I’ve had more positive outcomes from acupuncture, homeopathy, going to an herbalist/taking herbs, vitamins, supplements- but I like a combination of both worlds

12. If I had to choose between an invisible illness or visible I would choose: I’m not sure. I have both, both come with their own struggles

13. Regarding working and career: I’m glad it’s more acceptable in society to be 24 and living at home with mom & dad. I’m not able to work or go back to school…yet!

14. People would be surprised to know: I’m in constant pain 24/7. I think I hide it pretty well. Also, I do not have a circadian rhythm

15. The hardest thing to accept about my new reality has been: eating healthy/following a strict diet! I haven’t had the best eating habits, but now I have to follow a strict diet; no sugar (maybe 1-2 servings of fruit a day), low carbs, high protein, no white flour (whole wheat, whole grains are okay); It’s complicated and confusing! Also not comparing myself to others- someone may be able to get up early, work all day, then come home, have energy to go out, go to the gym, or whatever, sleep for only a couple hours and be ready to do it all again the next day- I will never be that person!

16. Something I never thought I could do with my illness that I did was: Graduate college

17. The commercials about my illness: I don’t see any on TV (living in NY/NJ) but when I visit my boyfriend in Massachusetts, I sometimes see commercials there- but only advertisements about pest control for your home, not about Lyme disease.

18. Something I really miss doing since I was diagnosed is: Every day activities; being able to do them every day

19. It was really hard to have to give up: my independence

20. A new hobby I have taken up since my diagnosis is: social media; connecting with others who have Lyme disease and educating the public!

21. If I could have one day of feeling normal again I would: I would spend time catching up with family & friends

22. My illness has taught me: So, so, so many things! But overall, it’s taught me how to be a stronger person

23. Want to know a secret? One thing people say that gets under my skin is: “Oh you’re tired? You just need to get up, walk around, get some fresh air, drink some coffee, etc.” It doesn’t work like that and yes I’ve tried all those things! I’ve now been trying to manage my fatigue/sleep disorders for 5+ years!

24. But I love it when people: Understand what i’m going through- or even if they don’t, they try to understand, plus are honest that they don’t. It’s great when people listen and of course, when they are supportive!

25. My favorite motto, scripture, quote that gets me through tough times is: I have so many and always love finding more because they are so helpful to me! Some of my favorites are, ”The journey of 1,000 miles, begins with a single step” and…

26. When someone is diagnosed I’d like to tell them: It’s a long road. You can’t look ahead to see how far you have left to go because that will only exhaust you. Focus on today, but I also try to look back and see just how far i’ve gotten; also that they have overcome one of the hardest parts, being diagnosed/figured out what was wrong!

27. Something that has surprised me about living with an illness is: It’s possible to live with a chronic/invisible illness

28. The nicest thing someone did for me when I wasn’t feeling well was: Sent me a card to let me know they were thinking of me; also, just listening and learning more about my invisible illness is so nice!

29. I’m involved with Invisible Illness Week because: My invisible illness, Lyme disease, is a growing, silent epidemic.

30. The fact that you read this list makes me feel: Happy!