The 'Disguise' I Put on When I Don't Want to Talk About My Illness
When left with lingering symptoms from a brain injury, it became clear the life I was so eagerly waiting to return to had long since been left behind. I was now living with a complex and rather debilitating chronic illness. In many ways I had to start over.
Solitude became my companion and coping mechanism. The absence of any routine or regular social interactions meant that I missed out on an integral form of human connection: being physically in the company of other people, for no other purpose than to be with other people. Recognizing this, I decided to make an effort to be more social.
When socializing casually, I choose to not disclose my illness. For starters, my health and what I’m dealing with is private. Especially with people I don’t know well enough, I don’t want to or feel the need to share. Even if I do feel comfortable sharing, chronic illnesses are incredibly complicated and it is never a straightforward conversation to explain the intricacies even the medical community doesn’t understand. Once I begin, it is like opening a can of worms where the conversation never ends. Further, when I do share, I am often greeted with a mixed bag of responses. Either people retreat with puzzlement, leaving me the recipient of unwelcome energy and a sense of heaviness and unease (I believe a projection of their own discomfort and fears of vulnerability and uncertainty) or curiosity takes over and I am bombarded with an endless flow of questions. Part of the reason I want to socialize and interact with others is to step away from this reality and seek relief from the constant focus on my health, in addition to having fun.
I think we all hold a set of subconsciously held beliefs and norms of how people should look and act in public settings. When something unknown or unfamiliar is witnessed, that particular behavior or thing usually attracts our attention. I don’t want the way I’m “unusual” to be what people notice when they first see me. Rather, I want my essence to shine through and not let that get clouded by any preconceived misconceptions or judgments.
In my efforts to be social, I unconsciously find myself leading a double life. In the spirit of not wanting to attract undue attention my way, I put on my disguise. Thanks in part to the fact that I have no outwardly visible impairments, I am able to go incognito and appear like everyone else.
When meeting new people the first question I am almost always asked is, “What do you do?” Never, “Tell me something interesting about yourself” or “What do you love doing?” Answering directly with, “Nothing, I am not working because of disability/chronic illness…” isn’t exactly the best way to start a conversation. My entire world got flipped upside down, forcing me to abandon my work, among other things. I am exploring new opportunities, trying to find something that accommodates my current situation; however, there isn’t any roadmap or plan laid out ahead. I have no idea what kind of job is suitable for me or in which field I want to work. So when I am asked that dreaded question, I answer instead with all the things I love doing. Whether or not they are my occupation is a technicality.
To manage my sensitivity to light, I wear a hat with a visor shading my eyes from the harsh fluorescent lights, consciously keep my back to direct sources of light and always choose the darkest part of the room to stay in. To help with my hyperacusis I wear ear plugs. However, when I noticed that people were staring at the little bits of foam popping out of my ears I became more conscious of covering my ears at all times.
Every time I step outside my house I must navigate through a minefield of potential triggers. One wrong step and I exacerbate symptoms with unpleasant consequences. Getting out is exhausting enough, without the added layer of constantly having to put on an act, anticipate triggers and position myself to mitigate them without being noticed.
Aside from the exhaustion, I often ask myself if this is the best way to proceed when socializing. Am I misleading others? Am I misrepresenting myself? Am I being dishonest to myself by not owning up to my reality and pretending to be something other than my true authentic self?
It’s not as though I am explicitly lying. I’m simply choosing to highlight what I wish others to see about me. Far too many unpleasant experiences led me to the need to put on my disguise, a self-defense mechanism more than anything else.
On the other hand, there have been instances when something inside told me to trust a complete stranger, and by putting aside my disguise I was able to connect with incredibly kind and compassionate individuals in deep and meaningful ways that would not have otherwise been possible.
Am I missing out on other opportunities to form meaningful connections with more people because of my disguise? Most likely. I must also be realistic that I have limited physical and mental energy. It’s a trade-off I choose to make for the peace and comfort of being able to enjoy myself for an hour or so and knowing I won’t have to talk about my illness.
There is no clear answer or rule of how to proceed. Over the years, I have learned to assess each situation and do what I feel is best for me. My disguise is readily available when I need it. On those rare occasions when my gut says otherwise, I know to be flexible and can put it aside as well.
The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.