We all have some mileage on the odometer, we all have scratches and dents.
And perhaps our muffler is permanently loose because it was never fitted right in the first place and got kicked too many times for being noisy. Maybe it even fell off at one point and had to be soldiered back on.
That’s what chronic depression feels like to me.
No matter how carefully I drive, the car I’m in isn’t completely safe.
The illness will never abandon me and you can be sure it’ll make itself known if I ever forget to take it into account. Which I often do, pretending it isn’t there because I’ve lost so many years of my life I refuse to be further hindered by limitations even though they exist.
Major depressive disorder struck in 2013 and incapacitated me for five years during which I was unable to think or write, which put the kibosh on my career.
As a journalist driven by vocation, my brain stalling was the worst thing that could happen. But vocation has somehow survived and endures to this day, helping me rebuild a life, word by word.
Does being functional again mean I am cured? Does it mean I am healed?
It means I strive to lead a normal life despite having a disability, just like some 300 million people around the world. And yes, the disability part came as a bit of a shock but I refuse to let a diagnosis define me.
In practice however, no matter how high-functioning I get, I can never forget my brain wants me dead.
And that it stands a good chance of succeeding should I ever choose to ignore its warnings.
Keeping any chronic illness under control is very much a worldwide geographical lottery, which can turn into a huge financial commitment.
And it isn’t one I have been able to meet yet.
Despite having private medical insurance purchased through my husband’s employer, I could never afford therapy co-pays and still can’t, such is the brutal reality of the US health care system. In America, good health is a privilege we pay for in monthly installments without any guarantee we will even get to enjoy it if we don’t have any cash left to pay more.
I was left to hold my own hand for five years, bar for a bully of a GP who tried very hard to push drugs on me the minute I showed up in his office, without him knowing anything about me or my genetics. His bedside manner left me in a hypertensive mess every time I went to see him so I stopped going.
When depression swoops down on me, I’ve learned to ride out the waves of deep despair because the moment always passes, no matter how long it lasts.
It’s a daily fight.
This is how I get by and how I cope and it’s not ideal. But when you can’t afford to get help, you have to find ways to survive, somehow.
Because, contrary to what the parasite in your head keeps telling me, I’m infinitely fond of life.
By definition, a chronic illness is a pathology you’re stuck with.
With this in mind, the best you can hope for is to manage your symptoms so you can lead as normal a life as possible.
And yet, we all use the words “recovery” and “healing” as shorthand when it comes to describing improvements, which erroneously implies we can get rid of a chronic illness.
The conversation about chronic illness will never change as long as we refuse to be bluntly honest: it is often a lifelong impairment. Whether depression or diabetes, you have a condition you need to manage otherwise it could threaten or even end your life.
In this context, it’s vital we use the correct terms in print because failing to do so can be downright harmful to sufferers and create unworkable expectations.
In a media context, responsible journalism is service and there’s no excuse to get it wrong.
Which isn’t to say science won’t find a way as life-changing discoveries happen every day and when it does, it’s not a chronic illness anymore.
Until then, copy that implies we can recover from something chronic only serves to further reinforce stigma. Words implying we’re broken, meanwhile, are disempowering to anyone but those who write them, and those folks are seldom well-versed in journalism ethics.
There is in fact an entire industry built upon peddling false hope and spreading the idea that, in the case of depression for example, getting well is a matter of ditching one’s attitude problem. As a result, when we do not get better we can end up arousing suspicion because the myth that we’re in control of our illness persists.
At the risk of being somewhat repetitive, there are no permanent solutions to chronic illness, only temporary ones that may work a lifetime if we’re lucky.
Because no pathology is static, treatment often changes to accommodate it.
To understand chronic illness, we must understand how it forms an unbreakable bond with its host.
Redefining what improvements are is key to managing everyone’s expectations. Pressure to be rid of something that is part of you isn’t helpful at all. In fact, it can make a sick person feel rather inadequate.
No one chooses to be sick any more than we get to dictate how the illness behaves. All we can do is pre-empt, react, deflect, and keep going. And when we’ve worked so hard to accept what we cannot change, please believe us when we tell you it’s irreversible.
We need society to accept this.
The sooner it does, the easier it gets to navigate the complex demands of a daily life that doesn’t cater to us. Because we’re not the default in an ableist society that looks upon anyone with physical or mental challenges with pity, as if we were lesser humans.
As a side note, pity is humiliating and dehumanizing so please, don’t.
A misunderstood chronic illness can quickly become the source of resentment as our best is never good enough.
Most standards are designed by and apply to healthy, able-bodied, neurotypical people. This makes them unrealistic for anyone else.
Although we neither hide behind our chronic illness or use our condition as an excuse, we’re often suspected of doing just that. This can happen in our own homes, with our own relatives so here’s what few of us will tell you: Seeing your humanity reduced or denied on account of an illness you have no control over hurts.
Instead of assuming what our life is like, please talk to us, ask us, and we’ll be glad for the opportunity to share how we survive and how we thrive, often against all odds.
Assumptions hurt us all but a conversation can offer much relief, both to sufferers and to those who care about us yet have no idea how best to help and support us.
I’m a French-American writer, journalist, and editor living out of a suitcase in transit between North America and Europe. To continue the conversation, follow the bird. For email and everything else, deets in bio.