Tonight I had a conversation about why I hadn’t been as active in some of the Autoimmune support sites this year. I found it interesting as I discussed it. I even surprised myself when I thought about some of my answers.
In the beginning the information I gained from all the different groups was invaluable. The appreciation I have for the people has never wavered; even though I don’t check in as much anymore. as I think back about all the amazing people now and how they changed my life I struggle to find the words. Truly.
Even the characters that I was not destined to become lifetime friends with where all very important in my learning curve and I will always appreciate the time and the support we shared.
Over the years I have amassed several health challenges and diagnosis, so it became quite difficult as I always felt a lot like a square peg in round holes… I never really completely fit into one group as there was a whole raft of other issues and complications that the groups could not understand or support; that wasn’t their fault or their problem.
I could empathize and understand a lot of the symptoms, pain, frustrations and challenges of one group and yet I had another list which no one could relate to or understand. I felt a bit isolated by it really. So I tried dipping in and out of dozens of different groups. It was becoming very tiring despite having some wonderful moments.
The overarching thing about all of us was that we all responded in very different ways to the the drugs and medications. Sometimes I would foolishly set my expectations of what I might expect of a certain drug based on others peoples experiences only to find that it didn’t work for me AND the side effects were debilitating. Often the side effects can be as the diseases. We are funny creatures. We all want to find our magic answers but sometimes there aren’t any to be found.
I found myself ‘surrounded’ by so many wonderful people who were all completely individual and very different in our plight and progress, despite the fact that we all shared these common diagnosis. Our results, our pain, our progress and our medications were as different as we were.
Some Autoimmunes were ‘high functioning’ and able to do some work and interact with the world to varying degrees, and then there were some of us (a lot less) who were severely affected and reliant upon carers and aids to be able to do the simplest of things. There really is NO way of knowing what your outcome will be with these diseases. They are as different as we are. So I found myself moving from group to group collecting bits and pieces from here and there and trying to weave it all into a cohesive survival tool kit. It was exhausting.
Today, almost a decade since my first diagnosis there have been ups and downs, more diagnosis and some things still undiagnosed/treated. There have been various drugs tried and tested. Scans. Tests. Specialists. Infusions. It is an ongoing and day by day experience that is unpredictable and almost incomprehensible.
Unlike other illnesses, like Asthma for instance, autoimmune diseases can change, they can worsen, there can be added symptoms which appear quickly and then improve. There can be symptoms that can worsen and progress very quickly and without warning. There really is no end to the parts of your body that can be affected and it can take years to even diagnose some conditions because of the insidious way that these diseases behave.
The one thing that I can say after all these years is that nothing surprises me or embarrasses me anymore. I think we have almost seen and heard it all. But while we may not be surprised by what these diseases can or will do, I AM always surprised by the devastating effects on people lives and the lives of those they love. I am deeply empathic and so each new post, each new outpouring, each new cry for help resounds in me. To the very core of me. It is impossible not to read the stories without feeling for them all. We have all had control of our bodies and destinies taken away and that is the common thread binding us all.
Some of us are trying to stay as positive as we can be. Some of us are trying new diets and scouring the internet for ANY new opportunity, any possibility. Some of us have decided to retreat into our worlds and try to make the most of life we have and manage as best we can. In the end, that’s what we all have to do isn’t it? We have to accept the realities of what has happened and try to make the best life we can for ourselves.
That is where I am now…
I am still the square peg but I am not looking in round holes or trying to fit in. I feel for all of the different people I have met along the way and I don’t know where we are all destined but I do know that I have met some truly remarkable people and it has changed me forever.
A few wonderful people have made me feel like family and that is how I see them now. Not as Autoimmunes or Chronic illness sufferers but as a real family. I adore them and I hope we will always be in each others lives.
That’s life isn’t it? Always changing.
Life can still surprise me no matter how much it changes. These people are not just the people that understand how painful joints can be, or how painful meds can be, or how scary it is to not be able to see or move. These people know its not just my body that have changed but its my personality, my future, my goals, my confidence and my relationships. They give me space when I need it. A shoulder when I need it. And they let me be vulnerable without judging me. I hope I give this in return too.
In a strange way we have formed our own unofficial support group and I never feel like a square peg with them.