We Need To Talk About Mental Health

I recently ran a Twitter poll asking members of the chronic illness community to vote on the topics that were most compelling to them when it comes to chronic illness content. The top choices? Self-esteem and self-worth, along with mental health. I wasn't surprised. At all.

It feels like we are screaming into the void

In many ways, so starved of conversation around these topics. While there are so many conversations on social media around disability and chronic illness awareness, it often feels like we are screaming into the void. We talk to one another. We like one anothers' posts. We support one another. But sometimes it feels as though the world around us — the world of employers and transit and everything else — can be very ableist. It's easy to feel invisible in that world.

And that makes us feel sad, hopeless, lost, frustrated, traumatized, or lonely. More so, it can contribute to depression or other mental health, especially in people who were already struggling with mental health issues prior to diagnosis or disease onset.

Doctors can be reductive

I have a sneaking suspicion that mental health matters are so difficult for chronically ill folks because doctor's visits can be so myopic and reductive. I've been told by so many people with AS that their rheumatologists tell them to lose weight, get more sleep, take this medication.

So much of the time, the "solutions" we are presented with lack a holistic or patient-focused touch. Pain and disease activity is fed by stress, lack of financial opportunity, poor diet, family burdens, depression, and lack of social support — in addition to the disease itself. So why are doctors skipping necessary conversations around mental health and other variables?

Even the National Institute of Mental Health says that care needs to be collaborative and holistic: "A collaborative care approach that includes both mental and physical health care can improve overall health. Research has shown that treating depression and chronic illness together can help people better manage both their depression and their chronic disease."¹

I wish we would be asked about our mental health more

If our healthcare providers — who are always busy and overworked themselves, which is part and parcel of the greater issue — asked us how we are doing mentally, perhaps more patients would feel comfortable opening up. Perhaps more healthcare providers might want to consider having a list of therapists, support groups, or holistic actions patients can take to support their physical and mental wellbeing. When we ask, "how are you?" — and when we consider the whole of a person — it removes the stigma of what it means to feel awful, to be sad, to be lost, and to need real, deep help.

Unless and until the system changes — until doctors can give us more time, until our check-ups are rooted in our physical and emotional wellbeing — we need to keep speaking out, speaking up, checking in with one another, and advocating for change. The burden shouldn't fall on the sick, but our voices do matter.

Here are some ways I try to keep the mental health/physical health conversation going:

• I ask doctors if there is a connection between my mood and mental health and my AS and how we can explore that.
• I encourage other patients to ask their doctors how they can open up a conversation around mental health and physical health.
• I try to educate others on the connection between mental health and chronic pain and inflammation so that they can be aware of it.
• I acknowledge my own mental health issues and hold space for others'.
• I take extra care of my mental health during flare-ups and I write openly about it so that others might feel less alone.