"How are you?"

And the Fear of Contagion

So much of Body Grief and the experience of body grief is not only about our unique experience in our own body, but also how others perceive our experience. It is that experience in which we have the opportunity to either feel safe, and seen or invalidated and lonely. The truth is, that usually that experience between our own body grief and how others perceive our truth, is rooted in ableism. In that, humanity tries to find ways to fit you into a box.

“She is in a wheelchair, so her legs must not work,”

“She is in a bigger body so she must struggle with food,”

“They have wrinkles so they must be old and tired,”

These assumptions are based in fear. Fear in the disabled body, fear in the fat body, fear of aging, or really losing control, whatever that even means.

Let’s use the example of Body Grief as it relates to physical disability and chronic illness. I find that my experience as a person with chronic illness and physical disability, is very much two-fold, in that it is not only about my perspective and experience, but also how the outside world perceives my experience.

I find that I am constantly trying to protect others from my own pain and truth.

“How are you?” is one of the most complex questions you can ask, because I fear that if I do tell the truth, I will ruin your day.

So I lie, and I say I’m fine, or I just ignore the question, because that is easier for me to manage than managing everyone’s discomfort around my reality. If I answer honestly, it means I trust you.

Since I have become ill and my mobility has declined, it’s almost as if my role is to not just take care of myself but to take care of everyone else when it comes to my health.

And that is when the advice starts coming. If I answer truthfully, I am at risk of unsolicited advice, in hopes to fix it. To fix my reality. Because that one piece of advice, that I didn’t ask for, will absolutely change the fact that I was born with a genetic mutation that causes my progressive illness (she said sarcastically).

But when I really think about it, I know their advice isn’t about “fixing it,” or making me better, it’s about them. Because there is no way I can be doing “ all of the things” to help myself and still be this sick right?! There is no way I can be eating right, practicing balance, stress management, meditation, eastern and western medicine, etc and STILL be so ill….because that would mean that it could happen to THEM.

My illness, my reality is so painful for others that they fear it may happen to them. Fear of contagion.

“You should try X diet, I heard it helps X,Y,Z.”

“I have a friend who swears by herbal medicine and meditation.”

“My sister’s friend’s cousin also has your illness, and she got better by cutting out sugar.”

I’m not going to lie, the unsolicited advice sucks, but what sucks even more is knowing that my reality is too painful for other’s to bear, and that it is now my responsibility to manage their reality of me. Fear of contagion. They are fearful that if it could happen to me, that it could happen to them.

As I manage everyone else’s perception of my day to day, I then feel lonely, sad, depressed, hopeless. The fact that someone is so scared of becoming like me that they feel the need to say something as stupid as “have you tried breath work?” makes me so sad. But I get it too. I was once that person. I almost miss being so oblivious to body grief that I would say such things because that meant I truly had no clue of the pain and suffering.

Fear of contagion is a piece within the body grief cycle, because the outside world’s perspective of us, and their own fear to one day become us, becomes our responsibility.

This can be applied to weight gain, motherhood, pregnancy, aging, sexual assault, trauma, etc. Body grief does not only present in those with illness and disability, it is a universal experience.

I want to give you permission, from one body griever to another, that it is not your responsibility to make others comfortable about your pain and grief. That may look like just saying “fine” when someone asks how you are. It make look like taking space from someone or setting boundaries. It may look like being more assertive and saying, “I don’t need advice, thank you.”

I give you that permission if that is what you need.

Do you share this experience? Tell me below!