This is the conversation the medical community forgot.
I am terrified to share what I’m about to share, but someone has to.
Here it is: I have not always told doctors told doctors everything. I’d tell them I didn’t have depression or that if I did, it wasn’t that bad.
The reason being, when I said that I had depression, chronic pain would no longer be the focus. The doctor would decide that my depression was the true and only cause of my problems, and that I was exaggerating (or outright lying about) my physical pain as a twisted cry for help. That’s when the infamous “attention-seeker” label would be slapped on me, and I would leave the appointment utterly crushed. In their misguided attempt at helping me, doctors unknowingly made it worse. I would leave their offices in a broken state where suicide was even more tempting.
I know there must be others who have no other choice but to be very careful– if not lie–about depression in order to get treatment for chronic pain. I want to document this so that medical professionals can understand and their patients can feel less alone. If being open about this will help only one other person, how can I stay silent? If I don’t speak up for them, who will? That is why I will tell my story.
For years, I internalized thoughts that no one would ever believe me and that I somehow– for some reason– deserved what I was going through. Some of what certain doctors were doing and saying could easily be classified as gaslighting. They convinced me that my own perception of reality could not be trusted– that I should look to them for how I was feeling. When I said I was in pain, they said, “Just push through it.” If I said I couldn’t keep going, they replied, “Yes, you can. Be quiet.” You can imagine the mental anguish it caused me, especially during my teenage years. These messages were repeated to me over and over by doctor after doctor, whether implied or said outright.
Now you understand why I learned that to get even the slightest bit of help or to be taken even the tiniest bit seriously, I had to lie and say, “No, I don’t have suicidal thoughts,” or “No, I don’t have depression.” That way, the doctor would actually address my chronic pain instead of dismissing me. That way I would be spared the pain and humiliation of being falsely labeled as a liar. Even then, I still had doctors tell me to “just exercise more” or “socialize more.” So why would I want to tell them about my depression and give them more fuel for the fire? They already thought I was nuts. Why make them think there was some sort of “proof” of their wacked-out perception?
The Big Question
Here’s the big question: what is this continuous invalidation doing to people like myself? One study by the University of Waterloo suggests that having a chronic condition increases the chances of a suicide attempt by 363 per cent.
In other words, chronically ill people are over 3 times more likely to attempt suicide than their healthy peers.
Another study from The Truth About Suicide suggested that 1 in 10 of all deaths by suicide were linked to chronic illness. So the research is there. The understanding of how life-altering and stressful chronic illness can be is there. The medical community acknowledges it. Therefore, my own experience is not probably not an isolated phenomena. There are many others suffering right alongside me. Why are the numbers so high? Why is there so little support available? What can we do to change it?
Changing the Culture
We’ve come a long way in our culture and in our medical practices in treating both physical and mental illnesses. Yet, we don’t understand how these two often mesh together. For example: someone who develops chronic pain will likely develop depression (or pre-existing depression will intensify). To be perfectly blunt, to me, this always seemed like a basic concept, and I was frustrated that every doctor I came across didn’t seem to grasp it. Instead, they wanted to completely separate the two, saying: you’re either having mental health problems with no chronic illness or you’re having chronic illness with no mental health problems. Ridiculous.
We have to recognize that the two are, in many ways, connected. Like we discussed earlier, evidence from the University of Waterloo study suggests that young people in the age range of 15-30 are three times more likely to attempt suicide than their healthy peers. Three times! Yet, doctors focus so much on the chronic illness piece that they often forget to check in on the mental health side of things. They forget that just because a patient has depression does not mean that they are “over-reactive” and are therefore lying about chronic pain. They forget that writhing in pain and sobbing would likely cause anyone to struggle with suicidal thoughts. It’s something that is incredibly obvious to those who’ve gone through it, yet largely misunderstood by those who haven’t.
In my other writings, I’ve said that I think anger and grief are healthy parts of processing chronic illness, and I stand by that. If we want to change the way future patients are treated, the majority of doctors have to come to believe that, too. If we look at the medical system as a whole, it becomes too overwhelming. We think to ourselves, We can never change that. But if we can get the word out in our own communities, in our own circles, in our own families, I believe we can enact change from the bottom up. Any change in thinking in the medical community takes a long time to enact, but we’re on the right track.
The statistics are disheartening, but the great thing about those is that they aren’t set in stone. Get help. I did, finally. Defy the statistics. Your physical pain is just as real, whether you’re depressed or not. Depression is not a sign of “over-reactivity” or that you’re “faking” your illness. Any doctor that implies or says that outright is grossly incompetent (and a jackass in my humble opinion).
In the Meantime
For those of us suffering right now, looking into the future and pushing for change may not feel like much hope at all. I get that. I’ve felt that. At the same time, I know that, despite how awful I often feel, all is not lost. I never thought I would find a smidgen of happiness after chronic pain crushed me, but here I am. I struggle a lot. I still cry a lot. I get frustrated. I want to give up. But I’ve begun to find myself again. It’s like having to reinvent yourself. I’m building on the same foundations I used to have. I’m doing some of the same things I used to, but it’s not the same. I have to adapt, twist, and mold myself to accommodate my chronic illness. I can still enjoy life– not always in every way I want to- but I can.
You see, I used to think life was over. I sat in the dark and believed I would never again see the light. All this trauma with doctors telling me that I’m “crazy,” the pain that often leaves me hardly able to function, the isolation, the sleepless nights… I am fond of writing, but I still can never put that amount of suffering into words. I can never quite get across how dead I used to feel– how I dead sometimes still feel.
The good news and the bad news is one in the same: it takes time. It takes time to grieve and scream and process the injustice of it all. Then comes finding ways to cope and some level of acceptance, but the frustration and pain remain. It’s not simple. It’s not linear. No one goes through it the same way, and often, it feels like there is no possible way to continue for a second longer.
But you do.
And you become unbelievably strong because of it.
You begin to find glimmers of hope, just bits and pieces at first. You collect them like seashells or sea glass. It doesn’t feel like much. It doesn’t look like much either. But pretty soon you realize that those little moments of joy are actually what makes life worth living. Those times, no matter how brief, where you laugh or enjoy the sunshine or just breathe, are the true treasures. It’s taken me a long time, but through all the misery, I’ve found that life is worth living, if only for the little things.
Photo used in graphic by Deividas Toleikis on Unsplash