Invisible Illness, I See You. A Short Story

On a rainy November day, my client shares the following account of her experience: “I am invisible and you don’t even know it. You see me, my face, my body, my hair, my clothes but you cannot see the way I move through the world. To you it may look like I am moving fluidly as I stand up to walk across the hall, and yet it takes every last ounce of energy for me to not fall flat on my face. I am so tired but I look awake. I struggle to focus on your words as I desire to sleep. My body aches but I look youthful and strong. I know what I want to say but I cannot access the word. I am not stupid; I am smart but I cannot think straight right now. Yes I have a high-powered job, which most of the time I manage but which also leaves me yearning for my bed at the end of day. No, I am not being flaky when I cancel plans with my friends; I am in pain. You see a healthy, young woman and I feel sick, exhausted, limited, and in pain. No, I am not delusional. I live with an invisible illness. Mine is lupus. Do you really know what that is?”

How do you work with that which you cannot see? What can I do when trying to understand the experience of invisible illness, which does not manifest in my client’s physical presence? How can my client express her momentary process when she cannot use language; when her mind feels fuzzy and she knows the words she wants to share but cannot access them? I wonder if she feels invisible to me. I want to see her. I want to know what it feels like to be her in this moment.  She tells me it is hard to connect to me and what I am saying because she is experiencing a “brain fog,” but she is able to tell me she feels so sick, like she has the flu. Then she shares that it feels like there is nothing else there. She complains that her experience is invisible and that it is frustrating to constantly have to try and make others understand what it is like for her to live with lupus, and that they cannot just take it for face value that she is not well, like they would if she had cancer or depression. I want to challenge her to be more active in explaining to others what it is like to live with lupus so that they can be more understanding. I have engaged with her in this way in the past and it obviously hasn’t worked.

Why do I keep doing that? Maybe I do not want to believe in the reality of this invisibility. I stop myself. I think about how invalidating it must be for people to hear her experience and to constantly forget it based on what she looks like. As a therapist I can easily comprehend why a person who is depressed struggles to find their words or how a person who has experienced trauma dissociates from certain emotions, but what is this experience that my client speaks of, this invisibility of being invisible? Why is this happening?

I wonder if her experience is actually the feeling of isolation and the dissociation that accompanies trauma, in this case the trauma of receiving a chronic medical diagnosis. Perhaps a piece of it is, but that thought does not help me in understanding her experience of invisibility nor in seeing her any more clearly. I associate to the concept of “passing;” passing as physically well when feeling incredibly ill, being viewed as a successful go-getter with no limitations, all the while pushing through the day just to fall into bed with pain in the evening. I think about what it is like for such a person to share with others that her whole body aches as she moves through a seemingly normal life. Who asks her if she needs a seat on the subway or a shortened work day? Who asks her if she is feeling ok? Nobody asks her these things. She has to ask from others, and often times needs to demand. She has to explain repeatedly why she is leaving a social gathering very early over and over, and to the same people. She thinks about carrying a cane as a symbol of her illness in order to avoid these conversations, and at times is even relieved when UV light gives her an occasional rash because it demonstrates that her experience does indeed exist in the world. She is frustrated with constantly having to advocate for herself.

She shares so much. There is nothing for me to understand. There is no hypothesis. There is just description—her experience of being invisible—when living with invisible illness, with lupus. How can I see her if I keep trying to know and figure something out? She is showing me and I am so intent on understanding that I might miss it. I just listen. I cannot visibly see the physical experiences she is describing. I cannot see that her body feels like it is pushing through molasses whenever she attempts to make any movement. I hear her invisibility and I see a moving picture of her experience as she speaks. And in those moments where her “brain fog” interferes with her finding her words, I hold in mind the image that she painted for me when she described at an earlier time what it feels like to have “brain fog.”  I cannot say if this is the correct way and certainly not the only way to work with invisible illness. At times it does not even feel like I am working. However, what I do know is that my client is being seen when I can be humble enough to let her show me. No more being complicit in keeping her invisible with my hypotheses and my own desires to help her. No more fears of really knowing the horrors that our own bodies can bestow. No more invisibility of the invisible illness.

Invisible illness, I see you.