Am I Well Enough to Help Others? Being an Advocate with Chronic Mental Illness
Updated: Jul 6, 2019
The mental health conversation elevates the voices of advocates who fit the recovery narrative: I struggled, I recovered, now I'm normal. People with chronic mental illnesses don't follow such a trajectory. Here, I talk about what that's like.
Last year I gave a TED talk on the dimensional model of BPD and my experience with the disorder. As I wrote my talk, I struggled with the pull to shape my story into the mold of the recovery narrative. I knew how talks like this were supposed to go: I detail my struggles with illness, the depths of my despair, and my victorious emergence to the other side. I knew my biggest struggles had to be behind me; I knew I couldn’t tell a story in which I was still sick.
Four months after my talk I was in the hospital: an emergency room psychiatrist chiding me for not working hard enough at DBT (Dialectical Behaviour Therapy) and suggesting I take the whole course over again. This is why I was suicidal, she said, because I wasn’t trying hard enough to get better.
As I began to disclose my experiences with mental illness, I quickly learned it was easier to place myself in the past tense. I had struggled. I had dealt with suicidal ideation and self-injury. Now, I was an honors student and researcher. Now, I was on the other side.
We are more comfortable with survivors if they have moved on from their trauma. If their pain is dealt with and neatly folded. We are anxious near pain that is current. Pain that interferes. Pain that is loud. We do not choose these survivors as our spokespeople, we do not give them awards, we do not allow them to write articles for the paper in which they bravely detail their past experience with mental illness.
The painful, chronic survivors we tell to be quiet. We do not invite to speak. We slowly expel from universities for lack of fit.
I do not know what it is to be well. When I am asked about recovery, I do not have a baseline against which to measure health. There is no reference point to mark before; how will I know when the after comes? In BPD, there are no isolated periods of illness bookended by normalcy. I don’t know what it is to not feel the slow, persistent throb of suicide, the knee-jerk response of self-injury when something bad happens. This illness is built into me.
This is not to say recovery is impossible. But it is not linear. It is not an arrival, not a permanent residence. It is a lurching process, slamming the breaks and accelerating. It is relapse and exacerbation. It is telling the psychiatrist at the hospital that you teach other people DBT, that you have memorized every acronym and know the skills by heart. That sometimes this is not enough. Sometimes the monster wins.
Recovery is an everyday process. It is choosing to get out of bed, to eat, to go to school, to wait half an hour before hurting myself. Then half an hour more. Recovery is still being alive, is the scars that turn from red to pink to white, is the anniversary and waking up to watch spring warm the new buds. You do not arrive at recovery; you practice recovery.
The scientific method ignores the reality of recovery. Recovery is meeting four, but not five, symptoms of BPD. It is the ability to hold a full-time job and maintain relationships. It is measured as a threshold, a finish line, something to cross. It is measured as a place at which you arrive. Ask anyone with lived experience of persistent mental illness what recovery is and we will tell you anything but this. We will tell you we have recovered hundreds of times, only to have been thrown back to the most terrifying depths. We will tell you we do not know what recovery is: how could we when we don’t remember a time we did not feel like this.
I live with BPD in the present tense.
Today I am recovering. Today I am sick.