This post is to shed light on the way that words, even if said with the best intentions, can still trigger emotional responses that cause a person to relive a trauma. I want to speak out about the way that we can move forward as a community and create a more informed narrative in which we approach the topic of discussing the many ways that someone’s autoimmune disease can appear to others. Autoimmune diseases are so much more than just physical symptoms. It is all too common for those battling their own central nervous systems to experience difficulties with their mental clarity, brain function and overall emotional and mental health.
A very common phrase that is often said to me when people find out that I have Multiple Sclerosis is that I don’t look sick or disabled. While this is meant to be a lovely compliment and I believe the people saying it mean to applaud my perseverance, unfortunately those words carry a vastly different meaning for me. When someone tells a person living with an autoimmune disease that they don’t look sick, or their response to hearing that someone has an incurable disease is something along the lines of: “You have MS!? No one would ever know; you look incredible!” it can be damaging, discouraging or even feel dismissive to the person whom it was intended to compliment. I know that we live in a time where people feel that hypersensitivity is a pressure point in our society’s culture. I am in no way saying that if you’ve said this to a person living with a disease, that you’ve done something terrible. That is certainly not the point that I want to make. I know we can all feel quick to defend and explain our intentions when we truly feel that we are coming from a good place, but before we enter into the territory of defensiveness, please let me explain why even a slight change of words can make a world of difference and still accomplish your intention of brightening a person’s day with your kindness.
There is something that we all must keep in mind when speaking to someone with an autoimmune disease, chronic illness or disorder. It is extremely rare that anyone outside of an immediate household member, spouse, partner, or closest confidant knows the details of an individual’s battle or what their current disease activity can look or feel like to them. Moreover, even those of us with the same disease or similar symptoms can not possibly know for certain the journey it took someone to get to where they are. We don’t know how much doubt, neglect, judgement, scrutiny, struggle or conflict they had to face in order to finally be told that they’d live a different life than the one they always planned on. It’s entirely possible that they faced some, little or maybe even no adversity at all. We aren’t ruling anything out here. The point is that we don’t know what we don’t know and as is the case with most autoimmune diseases, many of our symptoms aren’t outwardly visible. Therefore, when referring to our diseases and how we look in spite of them, it may be best not to do it at all.
I hope that you’ll allow me to use my own experience as an example, being that it is the only one I can speak of in concrete terms. I spent years constantly being told by medical professionals with decades of expertise that I looked fine, not sick and completely healthy when I was inundated with terrifying symptoms that no one could see or help me define. I lived in a perpetual state of fear that for my entire life, I would never be believed and I was feeling my sense of self worth, confidence and credibility crumble as I began to doubt my own intuition. A person’s reality can only be rejected so many times before they start to question their own sense of what is real and what’s not. If I see the sky as yellow, but astronomers from every prestigious institution in the country tell me that it is unequivocally blue, eventually, what I knew to be yellow might still seem yellow to me, but soon I will start to believe that it is called blue.
Being told over and over again that there were no visible signs or evidence of an illness caused me to internalize my pain and discomfort and convince myself that it was normal to live in distress. When I was finally diagnosed with Multiple Sclerosis, when I finally felt like I wasn’t invisible alongside my symptoms anymore, the absolute last thing I ever wanted to hear again in the context of my autoimmune disease was that I didn’t look like I had one. To me, those words were a sharp and deafening reminder of the isolation I felt and separation of my world and everyone else’s for almost a decade. Hearing them again, even when my sense of reason knew they were intended to mean well, still made me recoil and draw back in defense.
My hope is that by writing about this, by suggesting that there might be a better way to express our support, or to rephrase what it is that we are really trying to say, we could make a small change that has a tremendous impact on those who are struggling to cope with and overcome mental and physical obstacles. I am coming from a humble place of asking for the things that I need, a territory I’ve only recently begun to explore. What I would offer as an example would be this: instead of saying “you don’t look sick at all- no one would ever know!” I would much rather receive “You look great! Do you mind me asking how you’re feeling?” Saying that is still a compliment, but also isn’t dismissive of the person’s inner or outward struggles. It is something that allows them the room, if they want it, to explain their condition rather than having it be assessed by what is visible on the surface. It’s so simple, such a small token of consideration but another way that we are able to advocate for our friends and family living everyday with an illness that follows them everywhere they go.
I hope that over time, things like this will just become natural. I hope that speech and rhetoric that is sensitive to the issues that task our community will become the norm. Until that time, I know that it’s up to all of us to continue to redefine the things that we need and have the courage to ask for them. I can say that even while writing this, I feared that some might say “you can’t always take things so personally...” or “people obviously don’t mean it that way...” but I reminded myself again that I have a job to do. I reminded myself that I have to vocalize what I want and why I want it. It's okay if it doesn't always make sense to other people. I have to allow the people in my life to have the opportunity to make the decision to consider what I am asking for rather than stifle my own feelings to make others more comfortable around me. How I feel matters too and that is something that for so many of us took a very long time to learn and continues to need maintenance. It is up to us as autoimmune disease warriors to treat not only the conflicts inside of ourselves but to etch away at the common misconceptions we are faced with every day. Having an autoimmune disease is not just something that resides within us, but it changes our environment around us too and we should do all that we can to make it as hospitable and safe for us as possible. I thank you all for doing your part on behalf of yourself and others. Never forget that we are all in this together.
Lots of love,
Suni
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