My Visible Invisible Illness

Oftentimes, when people find out that I’m chronically ill I get asked the question “Would I rather have a visible or invisible iillness?” It’s such a hard question because there are “advantages” and “disadvantages” of each. Plus, I’ve never been on both sides of the coin before. How was I supposed to know if I would prefer having a visible illness if I didn’t know what it was like?

Well, now I kind of know. I have what I’m calling a visible invisible illness. How can I have a visible invisible illness you may ask? Easy. Sometimes my illness is visible and sometimes it’s not.

I have several different chronic illnesses and until about 3 weeks ago they were all invisible, until I was passed out on the floor (thanks Dysautonomia). It’s always been so frustrating to explain to people how I could look like a perfectly healthy 20 something female and yet be so sick at the same time. On the outside I’m the picture of health. On the inside my body is at war with itself 24/7 and no one can see that part or understand it but me.

But then, things started becoming more visible in my invisible illness world. I started using a wheelchair recently; especially when I’m at school to help with the extra weight of my book bag to prevent me from passing out as much. I don’t make it past 10 minutes standing any longer and that’s on a really good day. I also use it to counteract the pain from my Fibromyalgia and EDS. Let me tell ya what though, having a visible illness is very different than having an invisible illness. You are more noticeable. People start offering to do things for you that you can do yourself even in your wheelchair, but they feel sorry for you.

So now those visible invisible illnesses I was talking about. How does it feel to be someone with a visible invisible illness? Weird. That’s how. I use my wheelchair to get into school and class because I have my book bag. Then I walk to the bathroom. I see the same people both times and so I need to explain that I just need to use it for certain things because I have a condition that causes me to pass out sometimes. And they just stare. And it’s awkward. So I turn around and scurry back to class.

I also feel like I have to explain why some days I do not have to use a handicap parking space and some days I do. Some days my pain is less and some days it’s pretty high, but you can’t see it either way. Also lately my tiredness and fatigue is showing up on my face. I have had multiple people tell me the past two weeks that I look tired it is unreal. While part of me is excited that I’m finally starting to look as sick as I feel, I’m not excited that so many people are noticing the part that does not flatter me.

Anyway you cut it, having any type of illness visible or invisible is a journey every day. Either provides perspective for being grateful for the small things. But I think that being able to live in the realm of having a visible invisible illness gives you the best perspective. You know both sides of the story, how to accept anyone for themselves their uniqueness. Therefore, having a visible invisible illness seems like an amazing thing to me, so if that’s you, embrace yourself, because you are awesome! 

Why I Walk My Wheelchair to Class: Finding the Balance in Chronic Illness

One of the hardest things to do when you are chronically ill is finding the balance between laying in bed and doing absolutely nothing on the bad days and doing absolutely everything on your good days, so you in turn have 2 weeks of nothing but bad days. It is such a vicious cycle. And I am here to tell you, that I am the biggest failure of it of them all.

I am here to tell you that not even yesterday was I sitting on my front yard crying to one of my friends talking about the constant exhaustion and not knowing how to balance things and just wanting to have something positive in my life. Her in return telling me to do things small (like just one good thing for a small amount of time). And me in turn spending 12 hours in the hot sun today. FAILURE! We are in this together friends. I don't write these blogs because I have all the answers, I write them because they are my struggles and I know as someone with chronic illness that you probably do too.

I was originally going to title this blog "Am I really that disabled?: Finding the Balance in Chronic Illness"...but the real reason I'm writing this blog is because I'm having some minor, unnecessary wheelchair self-conscious issues. See I just started using this thing big time this week for school purposes. If I carry my backpack into class, I don't make it to class. I have to sit down in the middle of the street, parking lot, hallway, whatever, and wait for someone I know to help me to class because the ridiculous distance I have to park away from my classes (even with a handicap tag) plus the weight of my book bag (even with Kindle edition textbooks) does me in fast. So I'm wheelchair bound.

Lucky me, I've got a great pretty one. And I look great in it.

Unlucky for me are several things. Here I will make you a list.

• I get my own wheelchair out of my trunk, put it together, put my book bag on the back, and sit down and wheel off. I'm sure that looks weird. Like how many handicap people do that. 
• Once I get to my class I don't really need to use my wheelchair anymore necessarily because I don't have the book bag weight (unless I'm going somewhere further away, like to eat) so I look like a weirdo wheeling in and then walking to like the bathroom and water fountain and office and feel the need to explain to everyone when they ask me about it, even though it's no ones business. 
• My campus is not wheelchair friendly at all. The ramps are at a huge incline (for instance, the one in front of DISABILITY SERVICES was so steep, I took my wheelchair back to my car and packed it up and decided to walk because I could not get my chair up the ramp...in front of disability services...not joking) so it's super hard to wheel up them. Half the time when I finally get up them, there isn't a button to push to open the doors for me so I have to hope some one walks by to open the door for me, the doors aren't really wide enough for me to fit through comfortably, and the sidewalks are in horrible repair so it's REALLY hard to make the wheelchair go anywhere at any rate of speed because with my book bag, plus the chair, plus my low musculature and the fact that most of my dislocations happen in my upper extremities from my EDS it's ridiculous to try to get that thing to move fast (heck at all). Luckily, people have been awesomely accepting and willing to push me if they have been available :)
• The closest parking lot to my classes is a faculty lot. There are 3 handicap spaces in it, they are all filled by the time I get there (7:30 am) and rightly so, because there are at least 2 staff in the building my classes are in that are in wheelchairs and several other handicap people in other ways. Technically, as a handicap placard holder, I'm allowed to park in any handicap space, or any next closest space to my destination if a handicap space is not available. Technically, the next closest space that is available would be a faculty space that is not handicap in that lot. However, I've been going to a much further parking lot and parking in a handicap space there because it's a student lot and a handicap space and wheeling to class and praying someone will pick me up on the way, or I won't run out of energy because I don't want to send the faculty member I kick out of their space to the other side of campus to park. I feel like I'm not handicapped enough to make them forfeit their paid for parking space. However, my friend made me think about it last night. She asked me if it fatigues me more to go to the further away parking lot and go that far. I said yes, she told me that I should be parking in the faculty lot then, because I need that space. The faculty member can surely walk the extra feet, I surely need the extra energy to wheel across the bumpy sidewalks and down the hall to save that energy for my studies. Didn't think about it like that before. But that still makes me feel uneasy. So uneasy that....
• I have been seen pushing my own wheelchair from the farther away parking spaces to conserve energy and then if I need to sit down I will sit in the chair, take a break and get up and keep pushing it and then when I get in the building where it's all smooth, wheel down to class. Asinine I tell you. And if I thought I was concerned about people thinking I looked weird getting my wheelchair out of my car myself, and walking around the building myself without it throughout the day, how am I not concerned about pushing it down the street and not sitting in it? (I am by the way).

So these are some of the reasons why I'm even wondering if I'm disabled enough. Or what makes us disabled enough. But then I have days where I don't balance well. Then I'm reminded that I'm disabled. Pretty severely infact. 

Like today. My town has a block party every year. I always go all day because my mom works for a church that has a booth and my aunt and uncle's photo shop and portrait studio have a booth so I go to "help out" (hang out) with everyone. Well, we knew I was already having a rough-ish week. So I brought my wheelchair and did not get out of it much at all. The sidewalk was crowded though when mom and I went to go get lunch and the place we were going to get lunch from was literally 100 feet from where our booths were. So I parked my wheelchair and we walked. I almost passed out and had to sit down immediately in front of the grill at the food place. Then when we got back down to the booth (after eating) I had to sit down immediately again to keep from passing out. Both times were separated by at least 30 minutes if not longer. The only thing in common was walking 100 feet in heat. We should have brought my wheelchair. Oops. Or maybe I shouldn't have stayed the full day this year, knowing that I wasn't doing as well this year and I'd had a bad week already. 

I mean, it wasn't really a bad week (minus Thursday, that was bad) but it was the first week back to school and after 3 months of doctor's appointments and no other obligations or schedules. Having to be places at certain times, plus doctors appointments, plus homework, plus realizing that this stuff is serious and that the stuff you are learning if you learn it wrong could like kill people was exhausting. Plus, I have to be up at 6:45 and out at 7:15 every morning this past week. Eventually it will just be MWF and probably Thursdays for infusions (but I can sleep once I get to those). Lectures are 4 hours straight and that's hard for anyone, let alone someone with brain fog and chronic illnesses. 

I have to get back into the groove of things and remember to find the balance. I have to remember how to be good to myself and be good to the world. Another thing my friend said to me during our talk in my front yard yesterday was that she very rarely lets people see her for a full day because she wants people to see her when she is able to show them her good parts and her joy and I want to be like that too. Therefore, that means, I will probably only be able to see people during school hours for right now. But it's so true, when I'm tired I'm not a happy camper, and my mom gets a lot of that unfortunately. But pain and fatigue does nasty things to people.  But part of finding the balance is going to be making sure that I'm attempting to only show the good parts of myself to the world. That's the goal anyway. I told you...the word of the year is ambitious. 

So while I'm over here trying to find the balance of  living in the extremes of being too un-active and too active, wheelchair or no wheelchair, extrovert or introvert, joy or sorrow, etc. you work on that for yourself too and look at this picture of me today looking awesome in my wheelchair with my zebra t-shirt on embracing the fact that I can be ok being in a wheelchair in front of thousands of people. I guess. Some days I can be ok with needing help and knowing I need it. And that's the start to finding the balance.