Chronic Suffering

To not have your suffering recognized is an almost unbearable form of violence. – Andrei  Lankov

**Trigger Warning**

 

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.

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On the Fringes After a Suicide

If you’ve read my blog, you know I have dealt with suicide. In fact, I have been on both sides of the fence, having known someone who has taken their own life and having attempted it myself. I have read countless books and articles on suicide and how to move past the pain and loss. It’s been almost 20 years since my ex-husband killed himself outside my workplace and I still struggle with it but it has gotten much better. In these 20 years I have discovered there is little information about how to deal with the suicide of a person you are no longer in a relationship with; there’s little information on how to grieve a loss when this person caused you a lot of grief and whom you really weren’t speaking to but had two children with. These are not examples found in books and articles. It’s always about someone you love, who you were friends with or married to or a sibling or son or daughter. Not an ex. During that time, though I was re-married, I felt on the fringes of emotion and I felt alienated and very alone. People who had known my situation would comment with words of relief, which was two-fold. Relief that he’d no longer be able to torment me and relief that he had not taken me with him. But this person had been my husband and this person had been the father to my two children, who were too young to understand what had happened and who I’d not be able to sit down and discuss the nature of his death until they were much older. I floundered for a long time trying to deal with things in what I wrongly labeled as the “proper” or “normal” way to respond.

It is true that at the time of his death we were no longer married and that I’d moved on and found a great man and love. But affection and/or romantic affection are not exclusive to grieving the loss of someone who had been in your life, even if that person had not been the best representation of themselves that they could have been. After-all, I’d married him and spend a handful of years with him and had two kids with him. But I hadn’t been allowed to attend the funeral and again but very literally, I stood on the fringes of where friends and family had gathered under the canopy at the gravesite and saw his casket from afar. My dearest friend had brought me and we stood there, awkwardly watching and she held me while I cried. I can’t express how difficult it was. I was caught between grief and guilt, feeling that all of it was somehow my fault and I spent many, many years trying to grapple with guilt that was never mine, but had been re-enforced by his family in ways like not allowing me to be at the funeral and instead watch from the sidelines. Those subtle gestures are profoundly impacting and leave lasting damage to a person.

Even now, as I type this, I know that some would question why I felt so grieved by what he did. After-all, he had come to my place of work and could have, very easily at the time, come up to the office where I worked and done much more, lasting damage. We’ve all seen the deadly after-math of workplace violence. I think the difference and what has made it such a difficult thing to deal with is that I have seen things from the other side. Way before this happened, while I was still married to him, I’d tried taking my own life. I understand on a molecular level; the deep and profound pain he must have been in that it would lead him to show up at my work and would end with him dead. I understand so deeply that I don’t think I ever hated him for it. That is a lie. I did for a little while. I hated the knowledge that had he chosen a different path that I might not be here. But hate did not last as long the grief and guilt I felt and still feel to a much lesser degree. The anniversary of his death is coming in a couple of months and I will re-live every moment of it in a single thought, but the mood will last awhile, like lingering storm clouds without the rain. I have come to terms with it. I think death leaves its’ mark on all of us because we are afraid of it and when it’s unexpected it reminds us how fragile we truly are. This is true for suicide too, because while it may not be old age or illness that implies a fragility of the body, it is instead a fragility of the mind and no one is exempt from that.

I think it is difficult being on the fringes when someone takes their life. Even without the complications of my particular tale it is difficult. One of the things that can help people get past a death like this is having people to support you and it is difficult to get the support you need when you are unable to speak about the person in a way you need to because those around you feel you are better off. The difficulty continues and extends to friends of the person who died because they might not feel inclined to talk to you and may not even feel like your grief is genuine. When you aren’t exactly in a relationship with the person anymore people tend to feel like you shouldn’t have the feelings you are having. That grief and pain and whatever else you might be feeling aren’t yours, that somehow you forfeited your right because you are no longer with them. It sounds ridiculous when you read it, but it is very true. We’re funny as human beings when it comes to that and feel like we own the rights to how someone should feel. But being human, I care. I am also very empathetic and that empathy doesn’t see a boundary. So, I grieved long and hard and very privately for a long time, not feeling that I had a right to my grief.

My best advice would be to allow yourself your feelings and to grieve the way you need for as long as you need. If you don’t have someone in your life who will listen to you without being judge-y then start a journal. Writing has always been therapeutic for me and you don’t have to be prolific. You can write as much or as little as you need to. If you weren’t allowed to attend services, like me, you can light a candle and say good-bye the way you need to from home. I think it is very important to have closure in any way it feels right to you. I wrote a letter to my ex. I was sobbing at the end of it but it was cathartic and I did feel better. The most important thought I can leave you with is knowing that you are allowed your feelings and that no one should deny you. That by making you feel as though you don’t have a right to this and alienating you and leaving you on the fringes, they are doing greater harm. You may never be able to talk to their friends and family about how you feel but you don’t need to. You can self-heal on your own and become a much stronger person afterwards.