Society encourages me to downplay my symptoms and put on a good face
Our society emphasizes healthy dynamism, energy, enthusiasm, attractiveness and a positive demeanor. Then why does it bother me to be given a compliment about how well I look? But honestly, these compliments only make me bristle in certain circumstances.
To be told “well, you don’t look sick” or “you look good, you couldn’t be feeling that bad” can be a jarring experience. And then I find myself half heartedly mumbling an agreement with them — in order to end the uncomfortable conversation and not have to talk about my rheumatoid arthritis.
RA is an autoimmune disease characterized by chronic pain and inflammation, with swollen, red-hot joint flares that damage bone and soft tissue. It affects not just joints but internal organs as well, raising the risk for heart disease.
For example, in another life, I was an academic tutor for students with health issues. Challenging yet rewarding work, and I felt like I was touching lives, one by one, contributing productively to my community. I offered a meaningful service to my students and their families and it often made a valuable difference in their lives.
I tried really hard to not cancel student appointments for my health issues and often forced myself to work through my flares, which usually made the situation worse. Our society values being ‘able’ and those of us who struggle through disabling pain and stiffness are in a difficult position. Even touching briefly on a chronic illness, during a conversation, can be risky when it could have an undesirable effect on working contracts and relationships.
I know others who have chronic underlying pain and discomfort with intense flares on occasion; I know they have felt the same way as I do when met with insensitive comments, at many times on their journey. And I want to explore why we feel that way.
It’s because appearances aren’t everything. It’s like I am expected to have bloodshot eyes, bed head and be stumbling around in a stupor in order to be believed. With a chronic condition, one feels unwell more days than one feels well — if I allowed myself to ‘look’ like I feel, I would look awful all the time. It’s because people cannot tell what’s going on inside me and feel free to make a judgment based on how I look — especially when I try not to let it show and take extra care so people don’t assume that my appearance means I am not up to the task or the job.
As human beings and social animals, we let ourselves be influenced by community standards to fit into our larger society. It is the basis on which we form our identity as individuals in relation to others, but also with regard to what we are able to contribute to society. So we attempt to fit in and not make anyone uncomfortable by looking visibly unwell and by not bringing up our conditions.
So when someone says something like “I can’t believe you’re sick, you must feel better cause you don’t look it” — what goes through my mind? It feels like my reality is being negated. That a great deal is happening under the facade that I present to the world, and that the speaker cannot be bothered to look beyond it and hear my words.
Especially when I have provided an overview of my moderate to severe rheumatoid arthritis, to someone who I thought really wanted to know. Especially when I have been in pain yet still made an attempt to show up because I didn’t want to call in sick or cancel yet again. So what comes out of my mouth? “Oh, yeah, I’m better today.”
I know it may not be what they meant when they said it, but that is how it lands with me. And societal norms have me betraying myself, going along to get along, and putting a good face on it.
As I said earlier, society drives this thing. Increasingly, it seems that appearance is what matters in many situations. So how would it work if I showed up with a weary demeanor and sloppily dressed? Would that be enough for others to know that it was hard to get out of bed, stagger to the bathroom with awkward steps trying not to put too much weight on painfully stiff joints, and even brushing my teeth brought spasms of pain, that had me cradling my wrist and awkwardly supporting the toothbrush in both hands?
How do I say I feel awful but I want to be here so I’m trying? So don’t go assuming I am fine.
