30 Things You May Not Know About My Invisible Illness

Invisible Illness Awareness Week 2015 starts TODAY and runs September 28 - October 4 this year.

In Sickness + In Health will be participating here on the blog and on social media. Below is Cara's 30 Things list.

invisible fight

1. The illness I live with is: My primary diagnosis is Ehlers-Danlos Syndrome Hypermobility Type, a hereditary connective tissue disorder that affects how my body produces collagen. For me, this means I have painful, hypermobile joints that sometimes partially and fully dislocate, widespread soft tissue and nerve pain, chronic daily headaches, and moderate to severe chronic fatigue. It also causes me a number of secondary conditions that affect my autonomic nervous system, immune system, and heart. 

2. I was diagnosed with it in the year: Mostly in 2014, some before that, but many misdiagnoses before that. 

3. But I had symptoms since: 1994, and they kept piling on slowly over time. My symptoms have gotten progressively and significantly worse after a viral illness in 2007, a Lyme Disease Infection in 2008, and complications from a medical procedure in 2013.  

4. The biggest adjustment I’ve had to make is: Slowing down. My energy and abilities have disappeared in large chunks over time. Each time I lose more ground, it's like learning to live my life, in a new body, all over again. 

5. Most people assume: I’m not sick, I’m just lazy.

6. The hardest part about mornings are: Just about every part. The pain, the fatigue, getting awake and alive enough to feel human, if that even happens at all. Before I even get out of bed, I have to pop joints back into place that have shifted over night, and progress from laying to standing up very slowly so I don't pass out when I stand up. I have to immediately start rehydrating, which usually means lots of salt and 32+ oz of fluid. Just standing up to brush my teeth usually gets my heart rate up over 120 bpms. Just making coffee makes me sweat profusely. To my body, mornings are like running a marathon, and all I want to do is nap by the time I'm done getting ready. 

7. My favorite medical TV show is: If you're not watching Getting On, what are you even doing?

8. A gadget I couldn’t live without is: My iPhone; I spend a lot of time in waiting rooms. Honorable mention: iPad Mini. 

9. The hardest part about nights are: Getting restful sleep. Sleeping too long in any one position is very painful, so my body frequently wakes to move. I feel so lucky that I can fall right to sleep after, but it's often like not sleeping at all. I also get very vivid dreams due to some of the medication I'm on, which also contributes to that feeling of not having slept.

10. Each day I take __ pills & vitamins (No comments, please): 30+? Plus nose sprays and eye drops and injections and topicals... I stopped counting a while ago. 

11. Regarding alternative treatments: I do what works for me, and consider trying methods that make sense for my set of circumstances at any given time. I never pressure others to try what works for me, because I know it may not work for them. I use methods that mostly involve focused relaxation, counseling, mindful self care, and self compassion. Oh, and cartoons. 

12. If I had to choose between an invisible illness or visible I would choose: I don't know and this question makes me feel weird. 

13. Regarding working and career: I haven't been able to work full time in three years and had to quit a part time job a few months ago due to my fatigue and my overall symptom burden. I'm freelancing, and doing what I can from my bed and the couch, but I still just can't work enough. It's a real bummer for me and my bank account.

14. People would be surprised to know: Just how much pain and fatigue I experience. Even those closest to me would be shocked to know what it actually feels like. I hide a lot of it, and it's not easy to pick up on. I usually say my daily symptoms would land most people in the Emergency Department, but I know people don't think I actually mean it (I do).

15. The hardest thing to accept about my new reality has been: Learning to manage my energy resources and coming to terms with just how little energy I have. Not quite there yet. 

16. Something I never thought I could do with my illness that I did was: Actually find out what it was!

17. The commercials about my illness: Do not exist!

18. Something I really miss doing since I was diagnosed is: Hiking. Between fatigue, old injuries, the potential for new injuries, and the possibility of contracting another tick borne illness, it's not very fun or possible anymore. I may be able to get back to it some day, but never to the extent I'd like. 

19. It was really hard to have to give up: Internalized ableism, and the negative beliefs it's given me about myself and my body. Still working on it. 

20. A new hobby I have taken up since my diagnosis is: Podcasting!

21. If I could have one day of feeling normal again I would: I'd hike a big ass mountain and also go to the beach, preferably for some day drinking with old friends, and then eat a gigantic bowl of tortilla chips with a hundred different dips. I'd also bake a bunch of things. 

22. My illness has taught me: Everything. 

23. Want to know a secret? One thing people say that gets under my skin is: HAHAHAHAHA so much. How much time do you have? 

24. But I love it when people: Are willing to make adjustments to our plans so we can still hang out even when I'm not feeling up to our original plan. Postponing "until I feel better" isn't really an option, so I really appreciate it when people get it. Also when people are genuinely interested in what I have, and are open to learning more about it.

25. My favorite motto, scripture, quote that gets me through tough times is: "Nothing lasts forever, even cold November rain."

26. When someone is diagnosed I’d like to tell them: I would like to tell you that the hard part is over, but it probably isn't. A lot of this is going to suck, but it can bring you great things too. There are whole communities out there for connecting with others who are going through similar trials. Find your tribe, find doctors who make you feel supported, and don't listen to people who try to make you feel guilty for being sick--I'm sure you get enough of that from within yourself. Also: GO TO THERAPY.

27. Something that has surprised me about living with an illness is: How humbling and deeply life altering it can be. It turns out it's very true when people say that, and it's almost impossible to imagine until it happens to you. 

28. The nicest thing someone did for me when I wasn’t feeling well was: A doctor, who despite every test she ran on me being normal, said "I still believe you." She went on to play an integral part in helping to find my diagnosis. 

29. I’m involved with Invisible Illness Week because: I want people to know they're not alone, and they don't have to hide or compartmentalize this major aspect of their life. I want "normal" people to know that just because we look like them, does not mean we feel like them.

30. The fact that you read this list makes me feel: Slightly embarrassed, but I'm working on it. Thanks for listening, I hope it was helpful to you in some way.