Lately, I have been discovering that I have a few soapboxes. I’m not sure they are hills I would die on, but they are things I feel strongly about.
One that’s taking up a lot of my headspace lately is the impact of serious illness, especially chronic illness, on mental health.
*Steps onto soapbox.*
I’ve spoken before on how being in a wheelchair when I was just starting school left a lasting imprint on my psyche. But that’s just one of myriad ways that dealing with health issues can mess with your head.
The moment of diagnosis is probably the most traumatic point in the course of any condition. One minute you are who you always thought you were, the next you are someone slightly, or completely, different. In that moment, you are forced to start reimagining your identity. You now know that your body doesn’t function the way it did. That means adjustments – to your physical life, your social life, your outlook on life, even your personality sometimes. A life bomb has been detonated, and while you feel the initial effects immediately, there will also be aftermath while your head catches up to where your body has taken you.
As you move on from the point of diagnosis, dealing with a new condition can feel like a new assignment – something you can excel at. If you just follow the rules your provider gave you, you’ll be fine.
Maybe, maybe not. The physical symptoms of a condition are often inconsistent and varied. It takes a long time to learn your body with a new condition, especially if you were healthy before. Most healthy people don’t pay attention to their bodies the way chronic and autoimmune patients must. It’s like being in a new relationship with someone who is there all the time, needs attention all the time, and never gives you an hour alone. If it’s not your first condition, paying attention to each condition as both an individual and part of a whole is like trying to pick out individual notes in Beethoven’s Eroica.
Then you come to the realization that your condition is never going to go away. This will be your state of being for the rest of your life. These meds, these devices, this exhaustion, these limitations will be your reality for the rest of your life. If it’s chronic pain or another severe symptom, even if it was building for a while before diagnosis, knowing that it will be with you for the foreseeable future can send you down a very dark rabbit hole. Sometimes you can pull yourself out, but sometimes you can’t.
All of these points in the course of a chronic condition require a shift in how you think. If you don’t address it, the trauma of the changes will compound. When it does, it can manifest in self-destructive behavior, rebellion against yourself, depression, and even suicidal thoughts. We are not trained to get ourselves out of those circular thought patterns. We need help -- professional help.
Here’s a thought. What if we were prescribed mental health care at diagnosis? You get your new meds and you get the name of a social worker or psychologist with experience in your condition. You can start treatment right away, or you could go once and never go back. Either way, you would know that the help was there when you need it.* This is especially important for young patients who have less perspective and may not have had a chance to develop strong coping mechanisms yet.
Mental health care is just slightly more integrated into healthcare than it was when I was young. Cancer treatment is starting to evolve in a way that includes mental health professionals as part on the integrated team. But more often, mental health care is treated like it is a separate issue. It’s not. There is no such thing as a chronic diagnosis that doesn’t have an effect on mental health. But we still have mental health carve-outs (where an insurer kicks mental health coverage out of the main plan and gives it to a contractor) in health insurance plans, which allow insurance companies to be in compliance with the ACA’s requirement to cover mental health and substance abuse treatment, but makes it difficult or impossible to get reimbursed.
If we want the most effective treatment of chronic conditions (often with lower costs), mental health care needs to be considered just as important as physical care. Because it is. We need it to be included in integrated care models, to be easier to access and pay for, and to be understood as an essential element to the treatment of the whole person.
This will take a major paradigm shift within the entire healthcare system, from education to hospital systems to insurers, but it would be worth it. I was lucky. My mother had a degree in sociology and believed strongly in mental health care. I’m honestly not sure I would be here if not for the mental health care I have received fairly consistently since I was 16, even though I have paid tens of thousands to get it, even with insurance and help from my dad. All patients should have access to care like I did, just less expensive. It’s a vastly under-used, under-valued tool in a nation that is sicker than it has to be. Once we start using it as we should, positive changes will come.
*Steps down from soapbox.*
*BONUS: There are so many of us chronic and autoimmune patients, if we were all prescribed mental health care, and used it just once, the stigma around psychological treatment would likely ease. A lot.