After a lot of soul-searching, I found a blog title that said something of what I wanted to say about a life with invisible illnesses – autoimmune disease, pain, depression and dissociation. For the first time in weeks I’ve found a moment of strength to say something.
While I want to be hopeful, I find myself drowning at the moment. After another doctor appointment where I am told that I need endorphins, which is difficult when one is sad and sore. Sore… the pain is dismissed as some muscular thing yet again and yet I know it’s not normal to live in this kind of pain for over a year. At least the doctor had the grace to acknowledge the damage that western medicine has done to his patients, and that alternative therapies were better.
I know this much, and tomorrow I hope to start a Qigong practice to work on this aspect of myself.
Nonetheless, the chronic pain is grinding me down. I awoke from a terrible nightmare last night where I defended my loved ones and in return was captured and tortured until I attempted to end my life. The agony was excrutiating. It was not lost on me that the aim of this self-harm was to make the pain visible. For now, it is very much invisible, like the blackbird at night.
When I woke, I was still in the realm of the dream, and it’s been hard to set my foot outside of it today. I do long for the pain to be gone. I don’t know how long I can withstand it. I am like a wounded bird – I do hide my pain, so the predators can’t catch their prey. I have rejected self-harm, even the security of a walking stick, to hide my frailty. I do my job too well I suppose. So much so that a thoughtless doctor can dash off the words, “Doesn’t appear to be in pain.”
I know I have no alternative but to keep living. I know this will somehow pass, that the illness will wax and wane and that this is just a rough patch. I know that I could never put the burden of my choices on those I love most dearly. I know what living is with the scars of those who had to give up. I will not do that.
As difficult as the days are right now, when I seem to lose the ability to do anything but rest and sleep as my immune system crashes, at least I can take solace in the strength I must yet have to choose life.
I must celebrate that strength, even if it too, is like a blackbird at night – difficult for me to see. I must also honour the compassion that I require to take care of myself in a world where so many are in pain and suffering.
Now, I must rest.
Namaste,
Jane
6 Responses
While it may be hard for others to see, it does not mean that it is not there. Never doubt yourself and the truth of your experience just because others can not understand or find answers that fit in their "black and white thinking." I hope that will one day it will be easier for all who struggle with invisible disabilities. It is hard enough to be in a place of constant and debilitating pain and to have so called professionals unable to fathom the extent of that chronic condition or how the power of their off the cuff remarks that adds to the frustration and exhaustion that is part of these illnesses.
I am so proud of you, and will be with you every step of the way, for ever and for always. We'll find a way to get through the rough times and help to advocate so others can be heard and seen as well.
Carmen – thank you so much for your unwavering support and love through this. I know I could not make it through the days, much less the hours without you. xxxx
This is touching and does affect so many people .
It is very difficult for those who have not suffered to understand how hard it can be to get through the day or even being able to get to sleep in the evenings or the early hours of the morning.
When you are in a constant battle with your body and mind you are left exhausted wondering what is there left for me to do.
Some say live with it but as you know this is not an easy task.
Anything that can help anyone get through a difficult time like this deserves praise and a big thankyou from the many many sufferers
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Ross – thank you so much for taking the time to leave a comment and your understanding. It's difficult to be real about these challenges, particularly when we are urged as you say to simply "live with it". I hope you can find some moments of rest and peace. Thank you. Blessings, Jane.
Dear Jane… I think you've wrapped up your article so eloquently. You need to exercise the same compassion towards yourself that I have no doubt you show in looking after others.
Blessings,
Grace
Thank you for your sweet note, Grace. I'm working at it, and also looking forward to the day it is not so much work. Take care! <3
Blessings,
Jane