When people ask me what I have done to hurt myself I want to make up some really cool story to tell them instead of the truth. The truth is that I hurt myself by just sleeping wrong, by reaching up in the cupboard to get a cup, by braiding my hair, etc. I hurt myself daily because Ehlers-Danlos syndrome means that my joints are weak and pop out of their own volition. Sometimes I hurt myself worse than others. I have already had three surgeries on my shoulders (two on my right, one on my left) to repair and stabilize them from previous times I moved the wrong way, in fact the last surgery I had for this was in July of 2016. It hasn’t even been a year and I have hurt myself seriously again, this time my left shoulder. As I am writing this I am in excruciating pain, pain that is a step above the pain I feel on a daily basis. I have a high pain tolerance, but when I injure myself like this the pain becomes nearly unbearable.
I am writing this because it honestly makes me so angry. I am angry at my own body for being so fragile and I am angry with life for dealing me these horrible cards. The anger I have boils inside me because I do not have anything to direct it at. The pain brings me to tears, but so does this rage I feel. I am tired of having to go through things like this, of having to see doctors and of having surgery. I am tired of the doctors always being baffled, of looking at me like I am a complete mystery. I am only 25 years old, but Ehlers-Danlos syndrome makes me feel like I have lived a long, agonizing life already and when I think of the pain I will feel in years to come a new anger and dread fills my head. I know I am not the only one who feels this way, I know that there are many other people with various chronic illnesses who are as angry and upset as I am.
When I feel this way I know that I often direct my anger towards those I love the most. I become irritable and yell at people (or my pets) when they didn’t do anything wrong, but sometimes I just can’t take the pain. What do I do with this rage, how do I blow off steam before I explode in a fury of tears and unwarranted cursing? For me I write. When I feel like this I grab a pen and paper and pour all of these horrible feelings onto the page. I write poetry that tells the world how I feel and what it is like living with a chronic illness. I also paint or do other creative activities. I find that this is the best way for me to blow off some of this steam. It is different for everyone, but I truly hope that everyone who feels the way I do right now can find an activity or hobby that can help them to deal with the floating anger that comes with chronic illness.
I write this now because I want to get some anger out of my system, but I also write because I want other people who don’t have a chronic illness, people whose bodies don’t fail them, to understand what it is like for those of us who deal with this type of anger and pain day in and day out. I write this because maybe someone has a loved one with a chronic illness, perhaps Ehlers-Danlos syndrome, who is going through this despair and they do not quite grasp the situation. It is my hope that maybe by reading this they can begin to understand.
I think the best thing to do for someone who feels this type of anger is to let them express it and maybe help them find a viable way for them to blow off some steam. It is also important to understand that when we sound irritable towards someone or yell or curse, it likely has nothing to do with them and everything to do with they desperation we are feeling. So although it might not be pleasant to be around someone who feels the way I do right now, it is important not to take anything that is said personally. We need our loved ones to be the solid ground in the middle of an ocean of rage and pain.