Warning: This is a candid piece about a difficult subject. Please understand I am not advocating suicide nor is this a cry for help. I’m encouraging understanding and compassion.
The chronically ill suffer from severe depression, grief, loss, and a high suicide rate, but these symptoms are rarely openly discussed. Today, however, I will brave speaking candidly about the topic that is so much easier to ignore. We all know it is there, but neither the chronically ill, nor the healthy want to acknowledge the elephant in the room hogging the sofa and the remote. Why? Simple, the hard truths everyone would have to acknowledge are more terrifying than an IRS audit on infinite loop. Even at this moment many would rather suffer through its poor taste in TV shows than read on and acknowledge this particular elephant.
Well, I’ve never really been one to go with the flow. We need to drag the subject out into the sun, take a good hard look and have an honest discussion. The hiding and dodging may be more comfortable for some, but it is doing damage of its own. By ignoring it you not only make it bigger and scarier, but it also makes the one suffering feel even more isolated. It is better to be direct and honest. It is a brave soul that opens a door to a very private part of life and lets other people in. So, take a good deep breath, steady your heart and quiet your mind. I am not only going to venture into this taboo subject, I am going to share my personal experience.
The mental deterioration due to my illness is a part of me, my experience, and thought process that I rarely speak of because it makes the people around me terribly uncomfortable. Right there, my usual silence is a demonstration of how society makes surviving this side of chronic illness one of the hardest obstacles to overcome. In the medical community it is so well known that chronic pain and illness have such a high rate of depression and suicide that many doctors will make sure their patients have a counselor and was on antidepressants. Doctors are well aware, but society doesn’t fully realize the impact chronic pain and illness has on the mental state of the sufferer.
When my body first began its rapid slide to the current disaster I approached it like everyone else; go to the doctor, find the problem, and fix it. Obviously, right? Well, as the months started to turn into years and the pain and misery weren’t abating, in fact, they were increasing, my thought process began to diverge from those who surrounded me. I did go to the doctor, many doctors actually, many times, but that is where my original plan failed. The pain was from nerve damage, but that was where the understanding of my situation stopped. My body kept adding more and more disparate symptoms and the doctors seemed to get less and less understanding of my situation. As the confusion regarding my illness increased so did my pain and with each failed attempt at managing the pain or finding a diagnosis, my hopelessness soared.
At first I felt adrift, disconnected from everyone and everything. The days blurred and what was once important no longer seemed real. I knew I was a part of the world, but it felt more like I was watching it from afar. The life I had seemed so long ago and so far away. I would never live that life of adventure and accomplishment again and I grieved that loss terribly every second of every day. My days now consisted of lying in bed using ice, heat, medication, stretches, the fetal position, anything and everything I could think of to lessen the pain. I would have turned cartwheels in a clown suit if I thought it would help. Being pain free was unimaginable in my current state, I just wanted it to decrease enough so I could take a breath. All I wanted was a little relief, just a tiny bit, just an hour, or even a minute, whatever life could find it in its heart to grant me. The only real relief I knew was sleep and the first thing that goes with chronic pain is (drum roll) sleep. Even when I was granted short stints of sweet sleep I was told by others that I moaned and even cried in my sleep. My conscious mind got some relief, but my body’s pain continued.
After months of this, day in and day out with no possibilities of relief my heart and mind came together on one thing: what I was not living, I was just surviving. If I was staring down day after day, year after year of so much agonizing pain that I had no room for any quality of life I knew that this fight was a losing one and there was another option.
Suicide is usually associated with anger. Most of the time someone reaches a very dark place in their lives and kills themselves with some variation on the thought of, “they’ll be sorry,” or “I’ll show them.” It is often a permanent solution to a temporary problem. However, in some cases, there is no anger involved. I believed that my situation was permanent and realistically there wasn’t any reason to believe otherwise. I was in so much pain physically and mentally that I couldn’t survive a life time of this level of suffering. As far as I was concerned death would be a relief, it would be an end to this awful pain. I was only in my twenties and my body had forced me to face my own mortality, and you know what? I was okay with it. I was ready to go. I wasn’t angry. I wasn’t kicking and screaming and gnashing my teeth. As far as I was concerned it was my path to peace. The only problem was my loved ones.
I spent several months having subtle and not so subtle conversations with those I loved. I was trying to help them realize what a kindness it would be to let me go. That if they could find it in their hearts to understand the agony I suffered by living then they would want me to find relief. By the time I reached this point the only reason I was still alive was for the people I loved. I needed to know that they would be alright without me. At the same time I resented them for forcing me to continue to suffer. Some people understood and told me as much, to this day I am grateful for their selflessness. I know what that cost them to say and what they were prepared to endure for me. The people who refused to release me, on some level, though I understand their point, I resented it. They really had no clue how much pain I was suffering and in turn what they were asking of me. In this instance, to me, encouraging me to live felt like cruel and unusual punishment. Being alive and living are two different things.
Some states allow euthanasia for those with terminal illness. I have seen pictures and read stories of people attending their own wakes and the next day dying peacefully and comfortably in a bed surrounded by loved ones. I believe people should have the right to choose whether they live or die. Even before my body turned on me I believed that people with terminal illnesses should have a choice. Suicide for people like that is not anger; it is because their suffering is too great. Regardless of how the pain presents, you just don’t know what someone else is experiencing. What everyone needs is an honest discussion based in understanding and compassion.
Still from personal experience of grief I knew it was those left behind that really carried the burden. No matter how I suffered I knew if I died there were some people I would take with me. So I lived on in anger and resentment. That is, when I wasn’t too busy trying not to scream from the pain. My mental state just continued to deteriorate, many of my relationships suffered, and still I kept on keeping on. Living for others is no life at all. I have never been so angry in my life. Which didn’t help the situation at all. If you look at it honestly we were all being selfish. I wanted my pain to end and they didn’t want theirs to begin. I get it, I do, but I don’t think that understanding goes both ways. I doubt many people understood my side. Many felt they knew what was best for me and living was it regardless of what that life looked like. I, on the other hand, had a drastically different opinion on the matter. I believed and still do, that it is not the quantity of life that matters, it’s the quality.
That experience will forever make me mindful of what I ask of others. It has allowed me a lot kindness when it comes to understanding other people’s choices. It gave me a depth and breadth of understanding and compassion for which I am grateful, but I still think the price of admission was too high.
I was lucky, not too many months later I found a new doctor that offered me the peripherally implanted spinal stimulator, a treatment that I have no doubt saved my life. Even for those I loved I could not have survived long in that much pain. While the stimulator didn’t take away all my pain it was that modicum of relief that I needed to begin to function again. I am nowhere near my old life, but I have found small ways to pull enough pieces together so I can feel human again. It isn’t perfect, far from it, but I’m still finding new ways each day that make it worthwhile to wake up the next. That doesn’t mean I don’t still have bad days, or I don’t still struggle, I do, but right now I know how to hang on and find the next good thing that makes life worth living.
Depression and suicide are as much a part of chronic illness as all the other symptoms. The problem is that as a society we ignore and avoid it. Unfortunately this leaves the chronically ill alone to cope with some pretty strong demons. I believe if someone had sat me down for a non-judgmental discussion it would have lightened that load. This may seem like a terrifying discussion, but talking about it doesn’t give them any ideas. These thoughts have been bouncing around in their brains relentlessly for ages. Instead you now have the opportunity to offer some different perspectives or get them help if they don’t already have it. Just remember to lead with compassion and understanding; these thoughts aren’t because of you. Chances are, like me, they are holding on for you and offering your ear and shoulder will have profound meaning to them.