Nope, no invisibility here. I do, however, suffer from an invisible chronic illness. Sounds a little counter intuitive, I know, but by “invisible illness,” we mean one that doesn’t show immediate, outward signs. To someone on the outside, you can appear totally fine. I was diagnosed with Rheumatic Fever, an autoimmune disease, in the summer of 2012. I went to the doctor because I was having problems with my joints, mainly my hips, hurting all the time. This is something that had been going on for years, but had escalated quickly. He ruled arthritis out right away, the symptoms are similar but there were a few characteristics that didn’t match up. There wasn’t much discussion. Nurses took blood and I received the results on a piece of paper, along with a prescription for an antibiotic. There was just something written in doctor scribble about “Rheumatic Fever” in the top corner. I didn’t think much of it; I was just happy that my problem had been named and was something that might go away. A year or so later, after getting a second opinion, I learned that I might be “cured” of RF in 5-10 years…but the damage and complications could potentially last for the rest of my life.
I’ve never been what you could refer to as an “athletic person.” I was totally that girl in high school that would try to play whatever position did the least. I might the worst person in the world at sports, unless you count crocheting…which I do. As much as I openly consider myself a couch potato (favorite place to read from my incredibly impressive library,) I do enjoy being active. I like to swim when I can find pool access, jump rope and hula hoop, and recently started at-home boxing. It is awesome. It’s a really great workout that makes you feel like a bad ass. My activity dream, though, is to join a climbing gym with my partner and learn how to climb real rocks. We want to climb rocks, cliffs, etc., across the country one day.
Rheumatic Fever is a pretty rare disease these days. You may have heard of it if a grandparent or older family member had it as a kid. It usually affects the heart, but I’ve been really lucky on that count. The times I’ve had my heart checked for, “just in case” reasons, it has always been good to go. The unlucky side for me has been the joint pain and chronic fatigue. Basically, having an autoimmune disease means that my immune system is in overdrive and can’t shut itself off. In my case, I got an infection that didn’t show symptoms for whatever reason. My immune system had to work extra without any medicine to provide back up. When there is no more infection to fight, the system turns on your joints instead. My body is literally attacking itself from the inside. The antibiotics help to keep me from getting the bacteria that caused it again. Doctors monitor my progress by testing my blood every six months or so for something called ASO levels. That stands for Antistreptolysin O Titer. When my ASO levels reach normal again, that will technically mean that I am “better,” but the complications might remain for a very long time.
I’m a 25-year-old grad student studying visual art. I was getting an Associate’s degree in fine art when I was first diagnosed. My artwork quickly became an outlet for me. It helps me feel better, plain and simple, as well as gives me a way to discuss my illness with others when it isn’t always easy. I’m a sculptor, and extremely passionate about metal work. Making one of my pieces ends up being like a Shakespearean-level drama sometimes. As you can imagine, working with metal is hot, dirty, labor-intensive, and often grueling work…not exactly the most logical path for someone with my condition. Doing the work is the ultimate trial and the ultimate catharsis at the same time. It’s why I’ll never stop doing it.
It’s hard to describe what the pain feels like. It’s a deep, throbbing, pain…the kind that makes you want to roll your eyes back into your head for a minute. It just aches. It makes me hyper aware of every bone in my body. Have you ever been able to feel your individual vertebrate from the inside? I have. It’s almost cool except for the part where it completely sucks. Most days, the pain is just in one or two spots, and sometimes switches at random. It might be my right knee and my left elbow, or my feet and my jaw. There are a few all-the-timers, though, and my hips are the worst. I started walking with a cane at the end of 2013. I was worried about how people would treat me now that my illness was less invisible, but it’s the only thing that’s really brought me any relief. On the worst days, I’ll have pain everywhere and sometimes I can’t even walk. Using the cane has made those days fewer.
Usually, I’m pretty good at hiding the pain. I really don’t like discussing it with people. When you deal with extreme pain all the time, you can get used to it. A lot of the time I can ignore it. Chronic pain definitely helps you score in the compartmentalization department. I know that people mean well when they ask me how I’m doing, but if I’m doing an excellent job of ignoring the pain that day, asking me about it just brings it to the forefront of my mind again. I also have this, ridiculous (so I’m told,) fear of being a burden on people. I can’t stand asking for help. I hate the feeling of putting people out so they can help me with something I can’t do. It’s weird, but I sometimes I just can’t handle all the caring. I was in a head space last year where I was really down about all of this and really scared. I had a litany of friends and professors that cared so much about me it hurt. It was amazing, but really hard to deal with at the same time. Sometimes I think it’d be easier if I just never told anyone about my illness, if I just dealt with it alone.
I knew I had to start telling people, however, when I was pre-cane and flunked out of a class my first semester of undergrad for missing too many days. I couldn’t just go to the grad student running the course in the last week and be like, “Oh by the way, I missed all those days because I couldn’t walk.” Now I get to deliver a fun speech to every new professor or potential employer about how I have this thing that will maybe/probably/definitely make me miss more days than your attendance policy allows, and could you not fail me for it? Thanks so much.
Somewhere in all of those conflicting and angsty feelings is also the desire to prove to myself that I can still do some things. I started working out a couple of years ago to try to get my strength and endurance up. It’s just really basic, at home stuff. I hula hoop, box, and lift weights. I can only do it a couple of times a week, but it’s something that lets me know I haven’t given up on myself. One day if this stuff gets better, I don’t want to have to spend a ton of time getting into shape before I can do anything. I want to start now.
I think that’s why I love physical labor so much, too. You can’t beat coming home at the end of the day, sweaty and covered in dirt, knowing you gave it your all. Those are the best days. Going at it in the shop, music blaring, making awesome stuff with my hands and all the while knowing I’m kicking the crap out of a disease that tries to tell me what to do. I always come home on top of the world, exhausted but exhilarated.
On the days that can’t be like that, though, it does help to have someone to talk to. My partner is so supportive and knows me so well. He knew me pre-diagnosis so he’s been through all of it with me. He knows when I need help without my having to admit it. He doesn’t judge me when I get angry at people who say the wrong thing. He knows when to try to cheer me up, and when to just hold me while I fall to pieces. He is truly the best man in the world.
Navigating life and work and socialization while dealing with an invisible illness is rough to say the least. It’s hard to know what to say to people sometimes. There’s the famous, “you don’t look disabled,” and the constant suggestions of just sitting down for a while or getting more sleep. I usually get at least 9 hours of sleep at night. Chronic fatigue means always tired, people, no matter what. More sleep would start interrupting my day. The resting for a bit is always a complicated issue as well. Sitting in a conventional chair actually hurts my hips worse, but standing makes my legs tired. When I’m having a particularly bad day, the only thing that is really going to help is lying down…that doesn’t always work out when I’m at work or in the middle of a class.
Most of my family is pretty supportive, but it isn’t always easy. I once had a family member tell a friend, while I was standing right there that, “it’s nothing.” This was her response to the friend asking why I had a cane. I’ve also had some family members half-joking, half-not tell me to “look more disabled” when other people are around so that they don’t think I’m just trying to get attention. I’m sorry, but I don’t give two shits about what those people think. I get it. I’m young, I don’t look sick, I almost always go for the handicap spot even if I have to leave my cane in the car—I do not recommend trying to shop one-handed. It’s annoying and takes twice as long.
I also know people who prefer to complain about their own problems. I am still capable of being sympathetic, in fact I think living with pain all the time has made me even more so, but it still gets me when someone tells me they know how I feel because their back is sore from sleeping funny. I realize that completely sucks and I’m sorry you’re dealing with that right now. But please don’t pretend like you know how I feel. We can easily support each other without turning it into a contest.
Strangers are the toughest. I often get treated as if my cane is just a prop. I try to forgive people because a little girl with a cane is not something they encounter as often, but there is always a lot of staring. I definitely have more tolerance for it now after spending a week in a wheelchair last year. Don’t even get me started on how some people treat a person in a wheelchair.
I also don’t quite think I’m reading to be a poster child for disability in the workplace. I had a job last year where I worked with kids after school. It was only one day a week so I didn’t use my cane and didn’t tell my boss anything. A couple of people told me I should have used the cane as a way to show kids that disability is just another facet of “normal.” I am totally down with that concept, but I think I need to be a little more okay with talking to people about myself and my struggles before advocating for anyone else. That may be a path for me in the future.
It’s been almost five years now and when I’m just feeling like I’m starting to get the hang of all of this: trying to get over my fear of opening up by doing things like this, multi-cane-tasking, accepting that filing for disability might be a way I have to go for a while, etc., things are shaking up again. The good news is that my ASO blood levels are getting close to the normal range again. The bad news is that nothing has changed. I realize that it will take probably a very long time for my body to heal after all the crap it’s put itself through, but my doctor, and every internet site I’ve read, seems to think the poly arthritis part of RF should be temporary. I waited five months to get a much coveted, (by me) appointment with a rheumatologist to see if there’s something else going on, on top of the RF. The rheumatologist was so busy that I kept getting calls to make sure I didn’t need to cancel my appointment. Wow, that enthusiasm to welcome me as a new patient was overwhelming. After waiting for over an hour, she literally had nothing to tell me. I told her my symptoms and she barely said anything. The actual appoint took about ten minutes. It’s in my list of top ten most disappointing mornings for sure. All I got was a referral to another specialist, and a huge load of blood work orders. After two weeks, the doctor didn’t even call me to tell me the results. A nurse called me to inform me that all my bloodwork looked ok. That nurse was probably more compassionate to me than anyone I encountered at the office. A great big thank you to unnamed telephone nurse. It was nice to be treated like a person and not a paycheck. So here I sit, with a month left until my next appointment at a different department, hoping someone will be able to tell me what’s going on.
It’s going to be a tough road ahead and I’d be lying if I said I wasn’t scared shitless sometimes. I’m afraid I’ll never be able to work a fulltime job, let alone one that I really enjoy. Issues with mobility cancel out a bunch of prospects right away. Having kids one day is going to be challenging. Not just having the energy to keep up with them, but there is a genuine concern of dislocating a hip while in labor. You can laugh at that if you want. I have to laugh about it all sometimes. I try to do more of that and not worry about what’s to come. It’s an everyday fight, but I have the drive and the passion. When I believe something, I believe it hard. I know one day I’ll be at the top of a cliff that I’ve just climbed, with my partner beside me, or maybe even lagging behind a little. 😉
Whew, that was a long one! In case you got bored and just scrolled to the end, here is a fun summary of things I’d like you to know about me.
- Don’t fall over yourself trying to offer me a chair. I genuinely appreciate the sentiment, but I will ask for it if I need one.
- Don’t feel like you can’t talk about your problems with me, especially the physical ones. I get pain, ok, and that means that I am super likely to empathize with you and I’m also really great at hugs. 🙂
- Don’t ask me how I’m feeling. I will probably lie to you and then feel bad about it and it will be a whole thing.
- Please don’t ever tell me I’m brave. I’m not anyone’s hero and being told that is just super weird. I’m just a bro trying to fight my way through some stuff like anyone else. I’m also secretly (well publicly now) terrified of having attention drawn to me, so sticking a dramatic label on me will probably just make me scrunch my nose at you when you’re not looking.
To Ania Bula,
I read your book in three days. It would have been less, but I had to keeping taking breaks to adjust to the intensity of how much I felt this book. I think I spontaneously burst into tears like six times while reading it. Parts of it were like reading something I had written myself but just forgotten about. Reading this gave me the courage to pull the trigger on posting my own story. I’ve never experienced something that was so true to my own life while reading about someone else’s and it has affected me in more ways than I can say. Thank you.
Young, Sick, and Invisible by Ania Bula