Square One 

I am writing this whilst in the most awful and mind numbing pain, so forgive me if this is not my best work. 

After almost a decade of all this I thought I would be further down the track of understanding and acceptance. Perhaps I merely hoped I would be. Today reminded me of the very first time I felt pain and frustration, the first time I was so heartbreakingly sad by it all, so I had to ask myself today how far have I really come? 

Not far at all! In fact it feels more like square one again. 

I guess I always told myself that it would become easier and that I would simply make room for the pain and losses somehow, but today I realized I am not that serene and positive guru that I dearly wanted to be. Today I feel broken. 

I don’t know why I gave myself this high benchmark to reach. Perhaps because society expects that you just go away and quietly accept it all and because I don’t really know any other long term sufferers who have become masters in the art of Autoimmune Survival. I think there are many amazing survivors out there, millions in fact, but I just don’t think there is a hierarchy. There are simply chronic survivors and people who don’t have chronic illnesses. No other levels. 

I feel tired, tortured and sad because this is my life now. This pain is always with me. I can never escape it or have a day off. Not even one. I feel sad that I don’t have a different life and I have to just accept this one as my normal now. 

I wouldn’t call this a dark day as much as I would call this a reality day… and the reality is that these diseases are hard. They are cruel. And they take lives away and don’t apologize for one second. 

I am tearful today and I know that this is a natural reaction to a painful and sad situation. I might be tearful tomorrow too. But I hope there is a happier day in my future soon and I wish this for all of you survivors out there who are doing your best too. 

Gentle hugs,


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