30 Things About My Invisible Illness

I wish my friends and family understood... I think David gets it sometimes, but I don't really think anyone truly understands how miserable it feels to be inside this body. Last night, I woke up at 12:30 and panicked because David wasn't in the bed with me. I went up the stairs to find him and my heart rate went through the roof. I had to sit down on the floor of the office because I thought I was going to faint or throw up. I figured if I was on the floor and thought I was going to vom I could just crawl to the bathroom... But aside from the fact that I was a little sweaty, David couldn't tell anything was wrong with me. That's how it is with basically all my symptoms... No one can see them so they think I'm making them up... or that I'm a hypochondriac (that one REALLY pisses me off...)... or that I'm looking for attention... or any other number of various things people think about me that are WRONG.

*To interject here: I just had to get up to get something to eat before I could finish this blog because if I hadn't I might have fainted. Beta blockers mask the symptoms of low blood sugar, so when I start to feel light-headed or nauseous because I'm hungry it's almost too late. When I first read about this being a possible side effect of this medicine, I didn't think it would happen to me because I have never been formally diagnosed with hypoglycemia (even though I suspected it...) so I figured I was just being over-dramatic and that I didn't have it. But it has gotten to the point where I have had to ask my therapist if she had something I could eat so that I didn't pass out during a 50 minute session... So embarrassing...*

Anyway, I found the list below on another blog written by someone who also has POTS, and I thought it might be helpful to anyone who reads my blog... not that my family or friends actually do, but I guess I can be hopeful, right...?

1. The illness I live with is: POTS, or Postural Orthostatic Tachychardia Syndrome

2. I was diagnosed with it in the year: 2011. January to be exact.

3. But I had symptoms since: August 4, 2010. That is the date all of this started. But the more that I think back about my life, the more I wonder if I haven't been sick for longer and not known it... But 8/4/10 was the day it all hit me at once and I tried to keel over at Cedar Point. =(

4. The biggest adjustment I’ve had to make is: HA. I have to pick one? How about not being able to hang out with friends because I feel like I might faint or throw up every five seconds? Or how about when I actually CAN muster up the energy to get ready and go somewhere, the fact that I can't drink alcohol because it dehydrates me so badly and dilates my blood vessels so much that I think I might die. Or how about the fact that I literally can't go outside anymore without sunglasses on, even if it's overcast, because my light sensitivity has gotten so out of control. (To be honest, that isn't too awful, especially considering I look so awesome in my aviators, a la Top Gun.)

5. Most people assume: I'm not really sick. Or that I'm being over-dramatic. Or that I'm just trying to get attention. And I hate it...

6. The hardest part about mornings are: opening my eyes. I know that if I lay in bed too long I will feel worse than if I just get up, but the simple act of opening my eyes is awful. It is the time of day when I feel most dizzy (presumably because I've been laying down all night), and opening my eyes reminds me that I'm most definitely still sick. Every single day I wake up and open my eyes to a spinning room.

7. My favorite medical TV show is: Mystery Diagnosis or House.

8. A gadget I couldn’t live without is: my cell phone. Mainly because I am scared to death to go anywhere alone without it in case I feel too sick and need someone to come rescue me. I even take it into the bathroom with me. (You can say that's disgusting, but it actually came in very handy when I needed David to call me an ambulance in May...)

9. The hardest part about nights are: having to go to bed so early. I am an 85 year old trapped in my 23 year old body.

10. Each day I take: Metoprolol and birth control pills at night, and Florinef and liquid potassium in the morning. But check back in about two weeks, because my medicine is forever changing...

11. Regarding alternative treatments I: would like to learn more about them from a doctor. There are lots that I have heard about between forums and articles and such, but I'm honestly scared to try them. Messing with the heart is no joke, and I don't want to screw anything up. I do try to eat more salt than normal, but I'm not a big salt person, so I probably don't get enough. Also, I am literally like the most hydrated person I know, so obviously increased water intake is something I also do.

12. If I had to choose between an invisible illness or visible I would choose: is neither an option? I obviously wouldn't want to be sick at all. They both have downsides, though, so if I had to choose I don't know which I'd pick. Having people always doubt me is crappy, but I don't know if I'd really want a visible deformity and have people staring at me all the time either...

13. Regarding school: I am done with school for now. The first semester of my senior year (I was sick but undiagnosed) I missed a lot of school due to doctor's appointments, and I missed a few classes here and there because I was too sick to go. The second semester (I was diagnosed in January before classes started) I did better, but sometimes I was still too sick to go to class.

14. People would be surprised to know: that I'm even sick. Since no one can see my symptoms, they usually have no idea until they catch me checking my pulse or massaging my chest. I don't really tell anyone unless it comes up -- like when this dude Jason I work with REPEATEDLY asks me if I went out and got drunk the night before because I'm acting sluggish in the morning, and I have to REPEATEDLY remind him that I can't drink and that I'm just sick.

15. The hardest thing to accept about my new reality has been: that POTS could be forever. I try to remind myself that it can go away (which I've actually seen happen to Kaitlin's roommate), and that a lot of times when people get POTS because of a virus (which they think is why I have it) it does go away. It's just hard sometimes to remember that even if it does go away it's usually in 2 to 5 YEARS. But then I remind myself that I have already been sick for a year, and that usually helps...

16. Something I never thought I could do with my illness that I did was: a lot of things. Basically anything that involves being in a crowd of people or out in the heat is something that I always think I can't do, but then I just try it and usually it turns out just fine.

17. The commercials about my illness: have yet to be made. I wish there were something on TV about it at all, but there isn't, so people (even doctors and nurses) generally have no idea what I'm talking about when I say POTS. Couldn't they come up with a name for it that didn't sound so dumb to say? There was an episode of House about it once, and that makes me feel a little better.

18. Something I really miss doing since I was diagnosed is: being spontaneous. I miss being able to just be like, "Sure I can go do that thing you're inviting me to do. Give me five minutes to get my stuff and I'll be on my way." Now it's more like, "Oh you have a wedding you want me to be in in June 2012? I'm not sure I'll be feeling up to it, so you better check back with me later. Also, I hope you don't mind if I'm that guy -- you know, the one who faints at your wedding and ruins your wedding video while simultaneously giving you something to send to America's Funniest Home Videos... What's that? You do mind? That's what I thought."

19. It was really hard to have to give up: partying. Even before I got sick, I was sort of leaning toward the whole "drinking is evil" camp, but I'd still like to be able to hang out past 9:30 on occasion.

20. A new hobby I have taken up since my diagnosis is: learning about POTS. I am constantly trying to learn new things about it, and I'm always looking for ways to feel better.

21. If I could have one day of feeling normal again I would: sleep in. Then I'd get up and skip breakfast because I don't have to take medicine in the morning. Then I'd go take a walk in the sun without worrying about being road pizza after I faint in the street. Then I'd go to Happy Hour and have a couple drinks -- and I'd be able to sit at a high-top table without feeling like all the blood in my body has seeped out into my shoes! Then I'd drive at night without being crippled by the blinding headlights coming at me. I'd stay up late watching TV with David and go to bed without searching around for the other half of the pill I cut up the night before.

22. My illness has taught me: to think about the things other people might be going through that I can't see. It has also taught me that there are a lot of people right here in my own town that are far worse off than me. But it has also taught me to be very annoyed when people complain. Especially when they complain about something they can control -- like a hangover.

23. Want to know a secret? One thing people say that gets under my skin is: "I think it's all in your head." Well thank you mother, I'm glad you feel that way... I wish she could live inside my body for just one hour. Or just go up a flight of stairs in it.

24. But I love it when people: stick up for me. David has stood up to my mom for me on several occasions, and Jessie has done it too, to people at Chili's.

25. My favorite motto, scripture, quote that gets me through tough times is: that shit'll buff out. I have to remind myself that (hopefully) in a few years this will all be a distant memory.

26. When someone is diagnosed I’d like to tell them: that it could be something life-threatening that they are dealing with. I have to tell myself this all the time to stay humble.

27. Something that has surprised me about living with an illness is: how angry I still am and how much I still don't know about it.

28. The nicest thing someone did for me when I wasn’t feeling well was: understand. That's all I really want.

29. I’m involved with Invisible Illness Week because: ...well I actually missed it by about a month.

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


When I first got diagnosed with POTS I started my research about the illness at Wikipedia. The symptoms I currently deal with are visual disturbances, headaches, nausea, dizziness (even when I'm laying down), brain fog, fatigue, chest pain, digestive issues, difficulty breathing... and more that aren't as bad... A lot of the anxiety-like symptoms are taken care of by the beta-blocker, like the chills and tremors, but I still get anxiety a lot, and that makes the dizziness worse. I take Xanax as needed to help with that, and the people I work with joke around and say I should sell it to make rent. I wish they could only understand that I actually need it to be able to go out in public sometimes... I only wish anyone in my life could really understand. If they were to spend just one hour in my body, or even just go up a couple flights of stairs in my body, I think they would have a much better idea of what my life is like...