Do “YOU” Know

“Do you know what chronic illness is?”

“Yes my dear, my _ has stage _ _ _ Cancer.”

“No, I asked if you knew what it meant to be chronically ill, what it means to be diagnosed, for your body to rapidly change.”

“...”

It was a little after my surgery. The brain fog was lifting. I could think for the first time in 3 years. I could follow an entire line of thought without forgetting the thought in the middle of its formation. Remembering didn’t feel like walking through sludge with weights anchored to my ankles, most days at least. The reflections began. It was inevitable, the direction of my thoughts I mean. This time I was very much prepared for it, at least I thought so. I just knew I could bring myself back from the dark place. It wasn’t a free fall. It was a controlled arial dance.

I had begun researching for the third chapter of Normal Bodies. It was based on this idea of translations. What does an able bodied person hear or how do they interpret when a non able bodied person talks about their experience. It is still very much a chapter that is in its infancy, however I was gathering material. I asked some of the people who closely interacted with me during semester 2 of year 3 (the last stretch of hell) if I ever looked outwardly sick. Most of these people were someone who I spoke to about my illness at length. Went over the explanation multiple times over the course of 3 months.

Their answer was that I didn’t look any different from a fatigued year 3 art student. It embedded the invisibility of my disability and made me notice their tendency to give advice about the way I should handle my chronic illness. Their lack of understanding of the distinction between them knowing- experiencing it through their own body -what a chronic illness felt like and them knowing it second hand, third hand or not knowing it at all.

The advice was always, “it is not as bad as you think it is”, “there is so much to live for”, “don’t let this hold you back”, “you should do this, this, this and the other to make it easier to handle”. (Pardon my absolute disregard for what the this, this, this and other actually was. I blissfully forgot it.)

What bothered me is that, it is the first thing able bodied people think to do when a non able bodied person talks about their struggles. It highlights their inability to think of ways to accommodate to this person who clearly needs support, or rather their absolute disdain for inconvenience of any sort to them, very specifically. It also highlights their belief that they, a creature who has not lived a single day in the body of a non able bodied person, can handle- whatever illness that they have possibly never even heard of before this second -better than the person who has been dealing with it for longer than a able bodied person could possibly fathom.

The audacity to think that they would have any kind of advice that would be useful, advice that has not already been tried in the desperate attempt to not feel constant pain. The absolute gall.

I had spoken to this person. They were the person who gave me the confidence to speak to ‘the gaslighter’ (you can find the conversation when you click on the link). I had apologised for being a terrible group member for the project. I didn’t need to apologise in hindsight, but this apology didn’t mean much to me, not then not now. Then I had asked about if I looked sick, or if they could pick me out as someone who was terribly sick. They said no.

The conversation progressed, we spoke about ‘the gaslighter’ and how they missed me, about how my age was a factor of my mannerisms, the way I was always in a rush. I tried to tell them that my age wasn’t a factor in this scenario, that I was in a terrible place. One of the ways I coped was by being way ahead of the deadlines. I tried to explain to them what a chronic illness way. Their reply was “my dear, my _ has _ _ Cancer.”

I was stunned, stunned by the shadow of invisibility. Of having known them for two years and having never known this part of them. I was stunned and didn’t know how to react. But a part of me thought, “Well they know someone who struggles, like me. They probably are a care taker. They must understand.”

I felt comfortable to ask them about something that happened almost two years back. It was an odd day, I remember nothing of it apart form this one instance. I sat with this person amongst peers, tried eating a sandwich, had a coughing fit, puked out all that was stuck in my oesophagus. Rushed out of there because I felt humiliated. It took me a minute to gather myself, calm down, look past the gut wrenching humiliation and go back. I did and they just pushed all of it under the rug. Didn’t ask me anything. I was so very glad, but scared and tired, but so very glad.

I asked them about this instance and they said, “it’s normal, people be puking stuff all the time.” I questioned the bar of normal. What was considered normal? How far is normal? Were body dysfunctions normal till the point able bodied people weren’t violently confronted with the worst of the dysfunction?

It quickly became clear that they didn’t understand when they started giving me advice. That’s when the phrase, “you don’t know until you actually have it,” came to mind. I have heard chronically ill people say that in the community, I just didn’t understand how deeply true it was. I didn’t understand it till I felt like punching the screen of my phone when this person started giving me advice about my own chronic illness that they didn’t even care to remember about. One would say they had a lot going on, they didn’t have the responsibility to remember minutiae of my life. True, but they also did not have the right to give me advice then.

And then I spoke to the gaslighter the next day, or a few days later. One of the lines that stuck to me was, “I have had people die.” (Pardon me, I am paraphrasing. I do not have the capacity to dig for the exact life from that PTSD inducing shit show.)

It became abundantly clear that these people didn’t understand the distinction between living loss and death. I would choose death over living with achalasia. I would choose it a million times with more firmness than the last time. They just didn’t understand. And that’s when I realised, it’s because they didn’t know what it meant.

They didn’t know what it meant to start feeling the symptoms, to go undiagnosed or misdiagnosed for years. To advocate for themselves in front of doctors, friends, colleagues, parents. They didn’t know what it meant to be questioned, for their worth, their work ethics, their very existence to be questioned because of this one thing that the non-able bodied person could not control. They didn’t understand that every person who has this disease has a brand of this disease that is different. Their pain, their experiences, their fears, all of it was abundantly differently their own. Their anger, the loneliness, oh my goodness the anger and loneliness, it is crushing, debilitating.

The able bodied, however is bold enough to tell the non-able bodied person to not feel humiliated, anger, that they are not alone, to accept their body, to love it. They are completely fine with telling these people- whose bodies changed in a fraction of a second right in front of their eyes -about how they should feel about this change. They even think that they have some kind of cosmic right to do so.

When questioned about this absolute callous behaviour, their sheer ignorance surrounding the said matter, even when being educated, their answer often is, “well I have had this person, that’s close to me, suffer through this”, or “I have this person/people die on me, so you don’t understand the gravity of what I understand”, or, the worst of all, “I know a person with the same disease and they are okay so you must be faking for attention.”

I had people around me suffer or die or suffer the same disease, thus I am more qualified to tell you about your disease, about your body than you are of living it and in it.