Addicted To Suffering?: On Chronic Illness And Self Pity
As someone who comes from a trauma background — family separation, parents who lived with addiction, incarcerated family members, foster care — I've become increasingly invested in learning about how trauma rewires and rebuilds us. I have to be. In my own healing process, I can't simply ignore the albatross. I used to try to ignore the pain — especially in college, where partying and accomplishments could give me a sort of focus outside of myself and my family. But these dark things have followed me around for years — and now I spend a lot of my time and energy working through them, writing about them (here are a number of essays) and talking about PTSD with others.
When I started first experiencing ankylosing spondylitis symptoms, I was in my mid-twenties. The thought of being sick on top of being a broke grad student dealing with immense family trauma and PTSD was overwhelming, but in a way it set me up for a resilience I never thought I had and wish I didn't have to have. I had AS. That was that. And, of course, it gets a little worse as I get older.
I felt completely overwhelmed
I had days where I felt bad for myself. Felt overwhelmed financially, physically. Lost out on friendships, vacations, experiences. I had to quit my well-paying job. I started dealing with all sorts of health issues as the inflammation got worse. I had to learn how to navigate the changes that seemed to come out of nowhere. One day I was fine; the next I was unable to walk. So, I get it.
But I didn't want the disease to take over my entire life or identity, at least psychologically or emotionally. It could have my body; it could have my mornings and ruin some of my vacations. But goddamnit — I didn't want it to have my mind. I didn't want to live in a perpetual state of poor me, why me, I can't believe this, or this sucks.
I felt misery welling up inside me
In the beginning, I did. I think I vented so much I lost friends. I felt a dark wound open up inside me. The PTSD of my early life sort of jumped into overdrive — and after my diagnosis, I recognized something welling up inside me: Misery. Suffering. Trauma. Sorrow. I knew these feelings well. I knew them closely for my entire adolescence and teen years into adulthood. I felt safe, familiar, at-home with these feelings — and that meant that I was at risk for falling in love with them, letting them swirl around me like a hazy, drunk albatross of pain.
When I was younger, those painful experiences gave me a sense of identity. I was the foster kid. I was the girl with the sick mom. It gave me a sense of other-ness, mostly so I could avoid getting close to people. But the reality is, that doesn't serve me — or any of us. We aren't broken or bad or different simply because we went through pain. We are just people who need support. And we deserve happiness — not to live in a dark, bleak palace of suffering just because it's what we know.
I'm trying to choose happiness
I want to choose happiness — even if it's not always easy and my body hurts. And because I deserve it. So do you.
Plenty of psychologists explore this addiction to unhappiness. When we sit in our self-pity all the time (obviously, a little of it is totally normal) it means we don't have to take accountability for our feelings, to advocate for ourselves, to embrace the things that give us joy. It's not uncommon. David Sack, MD, writes, "Lifelong struggles with trauma or other negative experiences may fuel an unconscious desire to continually return to the status quo of unhappiness."1
Ain't that the truth. He continues, "In my experience, happiness is complicated....it may be true that happiness is a choice. To some extent, we choose our own thoughts and reactions, which impact the way we feel. We can improve our happiness quotient by taking steps to change our thinking (e.g., keeping a gratitude journal, staying mindful of the present moment, accepting what is, or developing healthier coping mechanisms). We can view our emotions as a signal that some aspect of life needs to change and take action to return to a better state of mind."1
I want to choose happiness. Not to see my life as a series of woes, including my illness. Not to give in to the 'why me' thinking that I definitely have felt before. I want to remember what is good and beautiful and luminous.
I know for many people that isn't entirely possible; there are lives of oppression, misery, and constant suffering. I acknowledge this. I am not suggesting we simply "love and light" our sorrow away. I'm simply saying, sometimes we have to say no to the comfort of sorrow and actively seek joy. We have to advocate for others who deserve joy.
We have to know when to put a brake on the abyss.
Do you use the word disability to describe your AS?