Reflections Of Living With An Invisible Disability
Arthritis is not a common disease for a healthy 18-year-old — which is probably why it took over a year to diagnose. Right after high school graduation (like immediately after), all my joints cramped up and I lost a lot of movement in my arms and legs. This is certainly not how I wanted to start my adult life and my first year of college. I had never been overly athletic, but I was used to the level of comfort that an able-bodied person enjoys. I couldn’t learn to drive because of the limited movement and pain in my legs. I had just gone through a breakup and dating seemed very ominous. I stayed home my freshman year and attended a community college which I took the city bus to.
Although my disability was very impairing at the time, no one could see it. I navigated the world with great difficulty, but also with no help from strangers and friends. No one my age knew what I was going through and no one knew how bad it was because no one could see it. I basically just looked like a lazy sad person.
After a long year of help from my family and holistic medicine, my life returned to as normal as it can be. Most of my pain is gone and in the last four years (I am now 24) I have taken part in various activities that I would not have been able to do otherwise. In those four years, I’ve navigated life in this strange place of presenting to be able-bodied but having a disability. Here are some things I have learned:
Trust people when they express pain, even if you can’t see it or empathize with it.
When I told close friends about my condition, I would get very strange looks and weird questions like: “Is it going to kill you?” and “Is is contagious?” Luckily for me the answers to both of those questions is “no.”
My friends had trouble knowing what to do with me. No one has ever said, “Don’t invite her, she uses a wheelchair,” but they have said, “She always cancels on us last-minute!” No one judges me on the street, but they also won’t help me if I need it because I look healthy.
My first year of college, I took the bus to school everyday. This was an extremely crowded bus and there often was not a seat for me. On the times when there was a seat, I would often have to move for an elderly person, pregnant women, etc. This put me in some very awkward situation where I either had to suck it up, or judge someone else’s ability to stand in comparison to my own. That never got comfortable and I’m still unsure of what to do. One thing’s for sure: Santa Monica needs more busses that run on Line 7 to accommodate people with disabilities.
Pain is not always represented visually or physically.
In my worst time of pain, I was issued a handicap placard for my car (when I finally learned to drive). To this day I still get very weird looks and murmurs when I use it. Often, people will walk up to me and say, “You know… this parking spot is for disabled people, which you clearly are not. So will you please move your car before I call the police?!” Other people like to put their words in writing.
On one day in particular, I was out to lunch with a friend, and when I got back to my car, I found this lovely note:
Isn’t is great when people offend your gender and your disability at the same time? No. Most of the time, the microaggressions towards my disability are completely accidental and unknown to the people who cause them. I know those people are well-intentioned, but I do not know what they think disability “looks” like. Perhaps I should wear stage makeup and have one of my limbs barely hanging by a thread. Then I would be able to have premiere parking without being harassed.
Another microaggression that I am not very fond of is when people comment on my appearance after they find out I have a disability. I am usually overdressed. The most casual I get is a blouse and jeans so on any given day, you can say that I do not dress like a “sick” person. Whatever that means. People will often say things like, “But you look so pretty!” As if people with disabilities are ugly and because I am pretty, I must not have a disability. People also often say, “But you’re so young!” Yes, thank you for pointing out that I am a youthful person with limited abilities. I had no idea until you just expressed that.
Communication is important, especially in new relationships.
Most of the guys I have gone out with have been super understanding of my allergies and limitations. But it always comes as a surprise. I am actually a low-maintenance person at heart but I often have to explain to guys, “I can’t drink that expensive bottle of champagne you just bought,” or, “Sorry I can’t go camping with you and your friends — I have a disability that is invisible but trust me it’s real.”
Here is an example of an actual conversation.
Guy: Lets just take off and go on an adventure tomorrow.
Me: I love adventures! But I have to bring all my own food, I have to get a good night sleep and I may or may not be able to exert myself depending on how I feel on that day.
That kind of planning makes spontaneity and romance a bit more difficult.
I’m doing a lot better, and am very thankful for that, but I will probably never be able to enjoy the level of comfort I did in my teenage years and am still trying to achieve.
What I most appreciate, as a person with an invisible disability, are those who listen compassionately about what I need, and try not to pass judgments on their assessment of my health. This disability has taught me to take to heart the words of other people, to give them compassion, and to never assume a person’s perspective. Today, as we try to help those around us, each of us with good intentions but varying levels of privilege, we must invest in the perspectives of those who are afflicted. We must listen to those experiencing transgression and oppression. We must listen to what people with disabilities actually need from us, and ask those who need allies what they need in order to truly be an ally. Remember to be understanding, because most of us experience trials in life — even when it doesn’t look like it.
