Sick Girl Advocacy
An essay by Ebony Ackland
How do you de-identify with something that steals such a portion of self?
I’ve spent the last 15 years of my life trying to pretend I’m not sick. I’ve hidden on the floors of bathrooms, curled up after passing out and walked back out into a room full of people with a smile on my face. I’ve walked blocks to get coffee or hop bars with groups of friends, with a shooting pain up my legs, trying not to fall over and simultaneously maintaining enough of a conversation with them that they wouldn’t notice.
I have rejected the notion of asking for help, telling myself my stubbornness will overcome my body and that nobody has time for me to be this sick. I’ve been refusing to let people know I’m the ‘sick girl’. Maybe it’s because late diagnosis are ubiquitous among invisible illnesses, and femme-identifying people have been endlessly dismissed or told it’s in their heads? Maybe it’s because we’re rarely believed, and so it can be easier to pretend rather than cause an inconvenience?
Our society doesn’t like messy; and when it comes to chronic illnesses and disability, messy is an understatement. Multiple symptoms, complex effects on mental health, long term rollercoasters of feeling ok one day and bed ridden the next. The emotional labour it can take to describe your condition when it isn’t necessarily visible to those around you can be exhausting. Yet, if we don’t speak up, how will we make progress, receive medical treatment or find support?
Academics in recent years have suggested that relationships between pain patients and healthcare providers are considered some of the worst in medicine. Negative stereotypes about people with chronic illness pose a “huge barrier in the delivery of care; contribute to worsening symptoms of physical and psychological distress; and play a role in policy decisions that adversely affect patients and providers. Pain-care seekers may be accused of malingering, laziness, mental aberration, attention seeking, and drug seeking.” There is a large body of research spanning several decades in Western countries attesting to patients’ experience of being shamed, humiliated, invalidated, rejected, and discounted when seeking medical care for chronic pain.
So what do we do with the ‘sick-girl’ trope? Attention seeking, depressed, needy, and that infamous word; hysterical. Now, the correct thing for me to say would be that this is a lie. I would pretend like women can’t be those things, that illness can’t be used to manipulate, and I would say that in the binary world of the medical hero and villain, women will always fit into the former. I’ve been privy to a lot of online forums and support groups for women who are chronically ill. Those spaces can be a war zone of competition for who-has-it-worse-ism’s and lashing out at others for the tiniest of misspeaking’s. They can be difficult places to be. And like so many other gendered issues, the tiny-tiny minority have been allowed to be used as an excuse to silence the quietly suffering majority into believing that their advocacy is perpetuating doctors cautiousness in providing support.
Would those people need to act that way if they had had the support they needed? Women are hurting, women have wounds, and those wounds can shape them in a way that their pain can feel painful to be around. I’m not going to deny that, we’re human. And I truly believe there is space for them too. Maybe their outrage is justified, and their behaviour is appropriate. They make us uncomfortable, and society deems them inappropriate. Their label of “too-much-ness” a continual reminder that they won’t be heard in their loudness, but their silence changes nothing. So how do we advocate for ourselves in a culture that doesn’t want to know about the diverse experience of suffering and disability?*
(unless you’re a white dude, then it's completely fine and we should stop the nation for some back pain)
Every time I hit the share button on an endometriosis post on Instagram, or bring up my illness in conversation, the first thoughts in my head are some critical version of “don’t be the sick girl”, or “people are over you talking about this”. My unfinished thoughts ask me if advocacy is just inherently annoying and that’s the point? That we need to take up space, make people uncomfortable and allow people to be honest about their experience without sugar-coating. (Sidenote: Can we make it a rule to never ask a chronically ill and disabled person if they’re “feeling better?”, we don’t have the energy to deal with your pitying looks when we are unable to say yes). Importantly, we need to be able to surround ourselves with people that are willing to sit in the mess and not offer individual solutions but help us take action to create a safer system for us to live in.
It can feel so conflicting to advocate for yourself with an inner dialogue that gaslights your experiences and tells you no one wants to hear it. I long for moments when people outside of our community join us in advocacy. In recent years, as I have been working through leaving a toxic community that I was a part of, I came across a quote that said; ‘I will recover loudly so others don’t have to suffer silently’. Whilst recovery is often not an option here, maybe when it comes to chronic illnesses we should ‘suffer loudly so others don’t have to suffer alone’? Should chronically ill people lean into being annoying and let others get over it? Or does the annoyance drown us out and leave or need for assistance floating in the sea of whinging people? I guess I’ll keep trying to be loud when I have the capacity, and hope others speak when I don’t.