To not have your suffering recognized is an almost unbearable form of violence. – Andrei Lankov
As a community I feel we try to give the validation and understanding that many within our community aren’t receiving on the outside. I can’t say how many times I have read a post on a chronic illness board, and read how truly excited people are that for the first time they are understood and not alone. But while we may feel less alone when we venture to these community boards or Spoonie chats, eventually, we have to return to our reality, and for many of us that reality is incredibly lonely along with being incredibly painful.
When I talk about loneliness I do not necessarily mean the state of “being alone.” Many of us have family, kids, spouses and friends who are supportive and many of us have jobs and other hobbies and interests that keep us busy. The loneliness I am speaking of transcends beyond that which we associate with absence of people in our lives. This loneliness is insidious and pervasive because even in a room full of people we can still feel incredibly isolated and alone. It’s a loneliness born from the isolation we feel as we endure the constant assault of pain on our bodies. This pain is not limited to the physical either, but the violence that takes shape through the neglect we feel, as our suffering goes unrecognized by so many, including those who love us and a medical community that is supposed to care for us. To a certain extent our effort to try and be normal, to buck up like good little soldiers and press on, to smile when we’d rather be crying and to sugar-coat how we are feeling to others when asked, has not done us any favors. It has left the perception among the “non-chronic,” that we aren’t quite as bad as we seem and worse, that we are lazy drug-seekers, looking to milk the system through disability. The indifference that we feel from those outside our chronic community is lethal.
Just for a moment, I want you to imagine with me this: You go from being a vibrant human being with friends and family, a great job and fulfilling hobbies, until one day you wake up sick. At first no one can tell you what is wrong even after test after test. Then, they tell you it’s all in your head and that you should get outside and exercise and you will feel better. Another doctor tells you to see a psychiatrist because he’s given up on finding anything and later on, pain management treats you with flagrant suspicion and red flags your chart as a drug seeker. In the mean time, your spouse (though they may love you) doesn’t know how to help you because they don’t understand what’s happened. You aren’t running a ridiculous fever and covered in lesions so why do you always hurt and why do you always feel so tired because you really do nothing all day? Your friends drop you like last season’s faux fur and if family wasn’t family you are pretty sure they would too. Working is reduced at first before being cut to part time before you can’t at all and you have to fight for disability. Anything else you once did for pure enjoyment is drastically reduced. You find yourself attached to the computer because it is a lifeline to normalcy, where you can talk to other people who understand this new reality. Then, when you are forced to leave those who have become surrogate family and friends, to be thrust back into an apathetic world you realize just how much you have lost and the knowledge of that can be too much to bear.
A few days ago I lost a friend I’d made on a chronic illness board. We’d been chatting back and forth and learned we were in the same city, planned on meeting after the holidays and then the holidays passed and I didn’t hear from her. But holidays are taxing and we all understand there are good days and bad days so I really didn’t think much when we celebrated New Year’s and I hadn’t heard from her. So when I received the message from her husband that she had reached the end of this battle with her illness and took her own life, I was devastated. The devastation coming from the intimate understanding of why she chose to end her life. This does not mean I am suicidal, or that anyone with chronic pain who has considered at some point, ending their own life is suicidal. I think that when you are living with pain that no one can control and you realize one day that it could be like this for 20-30 years, it can be an extremely daunting and terrifying thought. Also, let me say, that I am not condoning the act of suicide, merely saying that as someone who struggles with chronic pain and loneliness, that I can empathize with her thought process.
Her death is a tragedy. It is both a personal tragedy and human tragedy. Her family will have to continue without her, enduring all those life moments with her but it is still also reflective of something much larger. Her death sheds light on the inadequate efforts taken to both understand and effectively treat chronic illness/pain, that may have prevented this entirely. Perhaps each and every suicide that is driven by interminable pain and loneliness, should be a teachable moment for those within the medical community and also, those making opioid laws, that they might endeavor to do better for those patients suffering. Perhaps, a picture of her face, and one for each of those countless others who have believed that their only option was to end their life should be assembled before lawmakers and hospitals and doctor offices, that they can see the true suffering that stole their life away.
*Written for National Pain Report 1.18.18. I chose to share it again because suicide among those with chronic pain is very real. No one should feel suicide is a better alternative to living because of the pain they’re in. No one should be pushed to suicide because they were force tapered from their medicine. We are not addicts.