The first 12 months has been a huge learning curve. Perhaps a curve is too generous a description for it. Perhaps a steep climb that plummets quickly and deeply into the unknown is a better depiction. More like a swan dive!
Looking back I started writing my little blog in the hope that something I write might resonate with someone else AND the constant endeavor to spread a positive and hopeful message about the struggles of Autoimmune sufferers and the Chronically Ill. Well I guess it’s more true to say that it is the struggles of THIS Autoimmune sufferer and THIS Chronically Ill person. There is a lot I share in common with others but I have also learned that there is also a lot I don’t.
I admit that I was very naive and overly optimistic. Isn’t every idealist though? 12 months has done a lot to temper this.
Today I find myself looking back over my first year and sifting through it trying to extract some meaning and direction from it all.
Like any journey, you can’t possibly predict what will happen and what you will encounter when you set out, but you always set out with the best of intentions and possibly too higher expectations; I think I may have anyway. The reality starts to set in though after several months and I found myself asking “will I ever achieve what I hope to?”
Well, what had I really hoped to achieve anyway?
I had seen all these little clusters and groups forming all over the world dedicated to offering support and understanding for all of the different autoimmune diseases and sufferers, wherever they may be and however they might be suffering. It occurred to me that we might be stronger if we were united in our attempts to bring comfort, strength and support… Thinking back I might have been overly ambitious.
I thought that as a united group we would have more strength in influencing research and government policy. I always believed that we were getting marginalized and forgotten when it comes to public policies and public opinions. We are getting ‘labelled‘ by those who would like to depict us as malingerers and an easy target for those who considered us a burden on the community. I didn’t want to see that continue and know that somehow I failed to act to redress this until it was too late.I wanted to try.
I wanted to show that we are brave and courageous fighters trying desperately to fight a difficult battle from out there in society AND from within our own bodies! In many ways I still want to see this message successfully accepted into every aspect of our lives. From our friends, family, doctors, care providers, employers and governments. It’s an incredibly difficult, ambitious and daunting crusade. The last 12 months has shown me just how hard it really is. I have wondered if it will ever be achieved. I still wonder even now.
I started out hoping and wanting to help everyone, be everyone’s friend and make a positive difference to everyone‘s life! My gosh I set myself an impossible task and of course I couldn’t achieve it! Now, I have learned that I DON’T have to be everyone’s friend or HELP everyone. My goals and aims have had a much needed dose of reality and I am learning to be far more realistic about them. If I can make a positive difference to some people AND make a few positive contacts along the way, that is goal that I can accept quite happily. And I HAVE made some amazing contacts and connections along the way that have been a true honor. An unexpected and wonderful outcome from a year of blogging and learning.
Originally I thought the hardest battle was to ‘come out’ to my friends and family as an advocate. It was a real risk that I took because many friends and family where comfortable with my health status as long as I maintained a ‘don’t talk about it‘ status qua. It had a polarizing effect. Friends and family have either loved me (warts and all) and have applauded my courage and honesty, while there are still many who feel embarrassed, suspicious and judgmental and probably always will. I think coming out was important for me though, rather than hiding and denying my own reality for the rest of my life just to make others more comfortable and happy. The person that has been most proud of my coming out though has been me. Although there are days, and comments, that has made me doubt it and probably always will, on the whole I am glad that I had the courage to be myself to the whole world.
In the past 10 years I thought I had faced almost every painful event that life could dish out. I was wrong. I found myself, having had already lost so much over the past 10 years (i.e. job, friends, family, mobility, career, independence, identity, ambitions, financial stability etc) that I thought it was inconceivable that I could be hurt anymore than I already had but I was left speechless and disgusted when some of the people I was working so hard to help and advocate delivered painful blows and attacks.
I never expected attacks from these people of all places! Another lesson for any future advocate is that you will be attacked from anywhere and everywhere. Nothing is too low or off limits if you choose to try and be an advocate. You MUST be very confident within yourself and within your goals or you will quickly become undone and discouraged.
I have also been reminded that if you are tempted to be an advocate for the ‘glory’ or ‘celebrity’ you are completely wasting your time. Thankfully I didn’t start for these reasons so it hasn’t bothered me how many people ‘like’ me or ‘follow’ me. I think that is also why I am always surprised and delighted when someone writes me and says that something I have written has helped them or made a positive difference. That is ultimately why I am here and doing what I am doing. In this celebrity driven age, the only people who are prepared to go to any length to be famous are hoping that they will be rewarded financially (or otherwise) for doing so. I am not hoping for this and therefore I can remain my authentic self and completely truthful in my writing. Any opportunities that may arise from anything I write will be donated.
Not all of my peers will agree with what I do and what I write. Just like there are no two people the same, there are also many different ‘sufferers’ who have very different opinions and perspectives. I cannot ever claim to speak for us all, therefore my focus is to reinforce this message too. What I want and hope to achieve is not going to be supported by others who may share a similar diagnosis as me. I am not upset by this in the slightest as I think there is room for all our voices, I DO however expect that our messages are expressed with respect and tolerance. That doesn’t always happen. Its not an ideal world. Some people don’t like the term sufferer, fighter, warrior etc so it can be hard to even find agreement on what to call ourselves as a collective whilst still honoring the fact that we are indeed individuals.
Advocates are often perceived as being the experts and at the ‘top of their game’ and I have found that in the last 12 months this is most definitely NOT me. I don’t think there is ANYONE out there who is the expert in these illnesses and can predict, without error or uncertainty, what is going to happen and what is likely to happen within any autoimmune disease battle. Its just simply is not possible. Therefore I don’t give medical advice but just medical experiences. That’s why I don’t tell people what to do and just share some of the things that I have tried. As for being ‘on top of my game’ that isn’t even remotely close to my reality. My ‘game’ changes all the time. Sometimes I am batting pretty strong and other days my ‘game’ is a wash out. What I hope is that whatever happens to my game in the future I will always know that I gave it my best shot and told my story with honesty and sincerity.
So, what happens now? Do I continue to advocate? Do I stop before it gets harder and more painful? Have I achieved anything for the plight of Autoimmune ‘sufferers’ and the ‘chronically ill’? Has the whole experience cost me more than I have gained? Maybe I might have to wait another 12 months to find out…