As previously stated, one off the more frustrating aspects of dealing with this disease is that no one can physically SEE it. On the outside to a stranger I look like a normal person. If I’m having a moderately bad flare you may see me with my cane, but most days I can’t hold it due to severe wrist pain. The whole point of the cane it’s to help me walk without pain, so it defeats the purpose if I’m in pain just trying to use it.
For the first fourteen months after I was diagnosed I was still working. The first six weren’t so bad. I did have some pain and swelling of the joints, but that was back when I was riding the love train of Prednisone, a steroid that helps with inflammation. In those early days I hadn’t yet experienced any negative side effects with the drug and was convinced it was a cure-all. God, I was an idiot.. But after a scary trip to the ER with an episode of Pericarditis, a reoccurring heart condition I have that is common for severe RA patients, and three days spent in the hospital, my world started to fall apart. Flares became a weekly visitor and soon a daily. I found myself getting urinary tract infections often because sometimes it was too painful to make the journey to the other end of the floor in my work building where the public restrooms were located. Within a year I was using a cane, and sick days seemed to consume each month. I knew I was starting to sink around that fourteen month mark, but I pushed through for two more months before finally giving in to the disease, and the awkward requests of my employers.
About two months before the end of my career as a medical debt collector (oh, the irony- but we’ll talk about that another day) I was faced with my first confrontation about invisible illness. By that point I had just started using my cane, but had yet to sit in the seats provided for disabled persons on the public bus. I had always used the Bus as I’d never obtained a license due to what was probably always an irrational fear of driving. At this point I didn’t consider myself disabled. I was just a woman going through some health issues, and only brought my cane out if I really really needed it. Truth be told, I was a bit embarrassed to be seen with it.
I remember the day in question as clear as a freshly cleaned pane of glass. I love the smell of Windex and recall that scent as easily as I can recall how much unbearable pain I was in that day. I had considered calling in sick and hiding from the world and my disease under the soft covers of my king size bed. But I was stubborn back then. I had the notion that I wasn’t going to let the disease keep me from living my life, and certainly not from paying my rent. So I struggled with getting dressed and off to the Bus stop I went. That was the first day I caved and sat in the disabled persons area. Armed with my cane I felt as justified as the elderly woman next to me, and we even exchanged a knowing nod. By the time my bus reached the transfer point I was feeling mentally good. It wasn’t embarrassing to sit there. Honestly, it felt nice to have a seat the whole way, more often than not I would give up my seat to the elderly or a mother with a small child.
With painful effort I limped off the first bus and was grateful to see my transfer was arriving. This time the bus was overcrowded and I winced at the idea of having to stand for the remaining twenty minute ride to my office. However, to my surprise an older man in his sixties stood up as I passed and graciously offered me his seat. I was shocked and extremely grateful. As I lowered myself painfully into the seat and awkwardly held my cane between my knees I nodded my thanks to him. I don’t know if it was at that particular moment that I realised I was disabled, but the embarrassment had certainly started to fade. And I could see a string of incidents like this in my future.
Unfortunately, that’s where the sentimental part of this story ends. The bus stopped at a busy intersection near the local university and the majority of the passengers disembarked. I relaxed a little as I saw the older gentleman who’d given me his seat find an empty one towards the back and moved to claim it. In fact there were at least ten empty seats now throughout the bus even though those designated for elderly/disabled were all full. I checked my watch and saw I’d be arriving at work early, I might even have time to run to CVS and pick up some ibuprofen to get me through the day. My thoughts were interrupted when a shadow crossed my lap. I remember thinking how odd it was that I would see a shadow on a bus where the sun wasn’t present. I looked up to see a hugely fat woman in front of me.
Now I’m insecure about my weight as much as anyone who has to face those damn magazine covers while waiting in line at Safeway. At that point I wouldn’t have said I was overweight, but you didn’t see me rocking skinny jeans and a midriff halter top either. Being on steroids had made me aware that things aren’t always as they seem, and weight gain didn’t necessarily come from overeating. However, this woman could fairly be called morbidly obese. And she was standing much to close to me for my comfort. I like to maintain a personal bubble when in public with strangers, and this woman seemed like she wanted to share it with me. I cleared my throat and shuffled as much as I could in my seat to show that maybe she might want to back it up a bit. But that wasn’t her intention at all.
“Can you move?”
I was floored. Surely this woman didn’t just ask me that. “Excuse me?”
She repeated herself and then added for good measure, “I need you to move, I want to sit.”
Well, now that I had heard her correctly I was just pissed. But not wanting to make a scene in a public bus I decided to be the bigger (or in this case better) person and be polite. Perhaps she had never heard of manners before, and who was I to deprive her of them?
I told her that I wasn’t going to move as I needed to sit since I was disabled (huge admission for me at the time), but that there were plenty more seats throughout the bus that she could sit in and to have a nice day. Surprise, surprise, this was not the answer she wanted. She launched into a speech on why I needed to move. Imagine my rational outrage when she pointed to herself and stated “Clearly I am more disabled than you are, so give me your seat”.
This is where I come to the point in my story. I think as humans we are really failing as a community of people. Society has us believing all sorts of atrocious things, like those hard bodies on the covers of those magazines reminding women that they’ll be beautiful as long as they fit in a size two bikini, or that knowing who the Kardashians are married to is more important than knowing the names of your child’s teachers, or that you can really only make it in the world if you have a Black American Express card.
And it’s the same for health and illness in this country. It’s more acceptable for an obese woman to be seen as disabled rather than a woman in her thirties with a cane. Or an elderly man to have a handicapped placard instead of a young man with epilepsy. Our society is teaching us that if you can’t see it then it doesn’t exist. Now I’m not saying that the woman on the bus didn’t have a chronic illness, she very well may have had one. Although, for that size I’m sure a few too many plate lunches didn’t help the matter. But why did she think it was okay to assume that just because her disease was visible or easy to identify that it was more important than my own? Why does my mom have to feel guilty every time we pull into a handicap parking space because of the negative looks we get from passersby? Would they prefer me to limp even if I’m having a better day today than yesterday? Would it be more socially acceptable if I wore my disease on my sleeve?
I’d like to say that in the case of Christine VS The Rude Lady on the Bus I fought the good fight and rose above it. I’m sure my mom would have preferred I kept to the good manners she taught me and was polite to this crude woman… The thing about pain though, is that it doesn’t always bring out our best side… And when I’m in pain, well no one knows better than my mom that Oscar The Grouch rises out of the trash can and let’s people have it. At least in this case I can blame the pain, I really am quite a nice person otherwise. The woman waddled (no I’m not making that up) away and a few of my fellow passengers smirked, and even a couple verbally agreed with me. I made it to the store and work in a timely manner and two months later when the pain became too great, I stopped riding the bus to work. I didn’t have to be there anymore, and I started the now close to a year of being out of work on disability.
I still struggle with society’s perception of me and my illness. Having an invisible disease is hard. But I guess I have to thank my lucky stars that my disease hasn’t progressed to the point where it is visible. My fingers and hands may be swollen and stiff but at least they aren’t deformed. I may have gained seventy pounds of steroid weight, but I’m not obese, not even close. I have a lot of things to be grateful for. I just hope in time I can learn to not be frustrated and angry with people who judge me based on what they cannot see. I’ll try to be better, if you try too.