A darling friend posted the attached picture on her Facebook wall and as I looked at it I felt it pretty much sums up life these days, especially the life of someone with a chronic illness.
It seems as though it is common amongst Autoimmunes that everyone you know will get tired of the struggles that come with chronic illness, but no one more than the person going through them!
After nearly a decade of being at home due to illnesses I am truly and utterly over it.
The question for me now is how do we advocate for ourselves and make people aware of our changed circumstances without sounding like a broken record? Without replaying the same messages and struggles? I honestly don’t think there is an easy answer.
It is usually only other sufferers that have empathy for how hard we are fighting as they are fighting just as hard too!
These days I don’t discuss my health in conversation to anyone other than my doctors. No one knows (apart from you dear readers) what is happening to me at any given time. The reason for this is that it is tiring explaining all that is going on and since nobody asks I don’t really want to waste time explaining to someone who really isn’t interested. No one wants to repeat the difficult parts of their day to day lives to someone, this personal information isn’t general conversation and should really be reserved for those who genuinely care for your well being and are invested in you as a friend or loved one.
Friends and family will often tell me how busy, sick or hectic they are and I will simply smile and nod in reply. It seems to be the most socially acceptable way to behave now. Autoimmunes become the silent listeners. The shoulders to lean on. The invisible friends at the end of the phone.
I have often wondered if other sufferers feel the same? Is this the norm amongst all chronically ill fighters? If so, how do we make positive changes and redress this balance? I really don’t know.
Over the years I have been grateful for the constant love and support of my husband. However I have no doubt he is as tired and over it all as much as I am! He has been down in the trenches with me all these years, nowadays when he asks how I feel I even find myself smiling and saying ok to him too, regardless of what pain I am in.
Is that where we have to be now? In the land of ‘ok, thanks..’ ?
I even smile and say I’m ok to my doctors now! Even though I should be able to tell them everything. Perhaps it’s just me but I feel that once you have been sick for a long time, and have more than one health issue, you become a complex and bemusing situation for them. There is an uneasy dialogue that happens now which changes more and more as the years go by. I now find myself not wanting to bother them further so I keep a lot of what is going on with me, and anything that may have worsened, to myself… I know this is wrong medically but socially it becomes the acceptable behavior.
This meme prompted me to have many different thoughts and questions about how difficult it is to communicate now. The distance between people seems to be growing, despite the technology we are surrounded with, it feels as though the world struggles to show any empathy and care, and especially to certain groups of people.
My Social media pages are filled with videos of acts of kindness from unknown strangers from around the world, but why are they isolated incidences and why is it always somewhere far away? Why is it a always strangers doing such acts?
As much as we want a human connection and are touched by acts of kindness we struggle to find evidence of it in our daily interactions, which can leave us asking ‘does anyone really give a shit?’
When I think about all the things I care about, from people I love to issues like climate control, there are many things I give a shit about…perhaps too many! Over the years I have labored to do whatever I can do and I put my time and efforts (and Money) towards the people and things I really care about but I have wondered, many times, what difference does it really make?
Today as I write this I find I must recommit myself, daily, to showing my care and passion for those that I love and care about and remain grateful for those that care about me in return. This is a daily mantra now and it helps direct my thoughts and heart to places which I have felt the greatest peace and connection, like enjoying a cool breeze on a hot day.
Despite everything, I realize when I ask the question ‘Does anyone give a shit?’ my answer has always been … ‘I do!’