During my time I have read and enjoyed many blogs about the trials and tribulations with diseases and chronic illnesses. They have helped me to feel understood and not alone. They have saved my life on many occasions.
When I started writing I realised I, too, could be one of the many voices talking about the journey through pain, diagnosis, medications and side effects, but at some point I felt that wasn’t what I personally wanted to focus on.
Also, I didn’t want to seem like I was comparing or competing with my Autoimmune (chronically ill) brothers and sisters… And as for understanding medications, why flares happen, why diseases progress, when they progress, the sheer range of mystifying symptoms and the amount of pain that happens, I can honestly say that I am as mystified as the next person.
Perhaps it’s because of the sheer enormity of the puzzle and the mystery of the human immune system that leaves us still without answers and cures! Either way, I don’t consider myself an expert on all these diseases (despite reading, researching, writing and suffering several autoimmune diseases for a long time) … and I doubt I ever will. Add more than one disease to the mix and it is a logistical nightmare!
So I felt the need to talk more about how to relate to the world through chronic illness, talk about those challenges and how to try and make some sense of it all. This seemed more like what I needed to do.
Regardless of the diseases and the prognosis we have to eventually try to accept, make a life, and live as much as we can within our own spectrum and circumstances.
Many things still don’t make sense to me and there have been many setbacks along the way, but I feel that we all need to be able to develop a self respect, a purpose and a self esteem no matter what challenges happen to us.
It is a very common experience to feel lost, rejected, confused, abandoned and depressed when you become chronically ill, but this is also more things we need to try and manage along with all the other physical challenges. It can also be a cycle that repeats for many of us; including me.
That’s why my blog became more and more an open conversation about these experiences and connecting with others who have faced similar experiences and explaining to those who don’t live with autoimmune diseases/chronic illnesses what the journey can be like. Those that are willing to listen anyway.
I felt that in order to do that effectively I had to write openly and authentically. I had to risk opening up. I had to risk sharing feelings, fears and hurt. I had to risk my emotions and often my privacy, to get some of these feelings and challenges out there in the public domain.
I hoped that it would be worth the risks, and some of the personal hurdles to talk about these life matters. To share and possibly unite others by how our lives are changed and our futures affected.
I also like to examine each topic and hardship in a way that seems positive yet realistic.
I don’t think it adds anything to the collective to write about how bad my pain is and which symptoms are flaring. Or how many Meds I take and which ones have helped and which ones haven’t.
We are all so different in how our bodies react and progress and there are many bloggers out there who already write about these things very well.
We all have a place and a voice in the landscape and I am grateful for the opportunity to share and discuss how I cope and manage as we travel this challenging road together.