I believe that at some point in your fight for life with chronic illness you will encounter feelings of “burn out” where everything feels heavy, futile, exhausting and you have had enough. No matter how positive you have been, and try to be, the fact is that you can’t sustain constant enthusiasm and optimism indefinitely.
And you shouldn’t have to.
For nearly a decade I was filled with positivity, dedication, optimism and I wanted to spread hope and advocate for all those who shared my struggles. I set about making changes and raising awareness with stoic determination until the constant battles with illnesses and people started to slowly erode me.
My idealistic bubble began to burst with the harsh realities of life. My efforts began to feel futile and I felt that fellow sufferers either appreciated my efforts, were indifferent of my efforts, were critical of my efforts or even attacked my efforts. Nothing went the way I had imagined it.
Healthier people would sometimes welcome the insights I was offering but generally they ignore or feel indifferent (even annoyed) by my efforts. The backlash has been quieter and concealed but strongly felt nonetheless; like running into a brick wall.
Political correctness might have made some impact in quieting people’s public voices but it has not changed their thinking or emotions towards chronic sufferers or Autoimmune warriors. We are still regarded with suspicion and as attention seekers by the majority of healthier people.
It’s easy to give up hope.
I have left a lot of autoimmune support groups, even those that I was instrumental at building, due to my declining health and feelings of futility and disillusionment. The same worried questions and painful feelings keep coming up time and time again from within the support groups which only feeds the feelings of helplessness and frustration.
It all feels so overwhelming and unfair.
The hopes that I once had of fighting for justice and changing the world for those of us with these debilitating diseases and physical challenges have all but vanished. It feels as though I have been very naive and foolish and have had to face the harsh realities of life and the world.
I can now see that this world is willing to embrace and accept the plight of childhood illnesses and those with cancer and critical care needs but has very little empathy or compassion for those with long term or chronic illnesses, despite the global trend towards chronic diseases and illnesses.
I still don’t really understand why.
I have come to see these feelings and this phase of my life as “burnout” from battling constant pain, endless symptoms and struggles that I have emotionally “resigned” myself to a place of quiet acceptance and retreat. I want to avoid deeper and more painful feelings of hopelessness by “looking away” and retreating further and further into myself.
I feel silenced yet pleasantly numb at this point and use all my willpower and strength to ignore a lot of what goes on inside me now. Yet even this can be incredibly taxing. I have decided to only consult with my specialists in life or death circumstances as all my efforts and trials of medications have not been able to stop my steady decline over the years. Although many doctors would label me a “bad” patient the reality is that I am simply a “tired” patient.
I know on a very real level that all of these feelings are normal and valid for someone who has fought pain and disability for a decade now and I am sure I am not the only one. I see my husband and carer looking and feeling very similar as me. Long and sleepless nights have taken their toll on him too. Seemingly overnight he and I have aged dramatically and in desperate need of relief and levity.
I can’t help but feel responsible for the impact I have made on my husband’s life and health but he has always assured me that his love has only deepened over the years, and for that I am truly grateful. He is the only man I have ever known that has given more than he has taken and with a great capacity for love and devotion.
I have certainly gathered a lot of emotions, learning, maturity, empathy, understanding and wisdom over these past years that I am doing my best to now put into some order and utilize as best as I can and I feel as though this is all I can do, and will do, for now. I have decided to still write and document all this in my blog for my own benefit as well as a sincere wish that it may help someone else going through the similar experiences as me.
Like a forest which has been devastated and decimated by a fire I must now regrow, renew and rebuild what little I have left and hope that I can return to a stronger place again. What that can and will look like will be a matter of time but I will do my best and in the end that all we can ever do…
5 thoughts on “Chronic Burnout”
I relate on so many levels Trish. A really important and poignant blog post, eloquently written as always. Thank you for sharing such indepth insight into living with chronic illness. You are making a difference, more than you perhaps realise. xx
Thank you for your kind words and encouragement. I do hope all we do will have a positive effect in the end, my friend xx
Burn out? Heck no not me. I will never burn out. I might explode, but burn out? Naw.
Actually it is a very big issue int he diabetes community, which has little to do with pain. In the diabetes community we tend to burn out from the repetitive nature of the condition. I know i am getting burned out when I no longer care much about anything related to health. I always give myself insulin, but I will tend to skip Blood Sugar checks and sometimes i just like to stay in bed with the covers over my head.
I like being in bed with the covers over my head. Now that is being burned out.
Dear Trish, Sam is right, you are making a difference. Just reading your words, sometimes through tears as I relate to your struggles, made me feel that I am not alone in living with Chronic Illness. I admire your trying to get people to understand and I too have experienced the loss of friends and the indifference of loved ones to an often invisible medical condition. People seem able to understand childhood disease and life threatening diseases, as you said, but not ongoing, often invisible, medical conditions. Please remember to take care of yourself and know you are never alone. There are so many of us out there that appreciate your efforts and feel better reading your words, that you are making a difference even if it sometimes doesn’t feel that way. Good luck with your new adventure in rebuilding your life and I hope that you are able to find appreciative and receptive people that aren’t judgemental as you are a kind and giving person that this World needs. Thank you for sharing your story. Love and understanding hugs, Lynda xxx
Thank you so much for words and the time taken to share your thoughts x I am always amazed by the strength in those I have never met but grateful that I get to connect xx