You get to a point with progressive diseases where there are more and more struggle days than easier days and that is where I am currently. When once symptoms cycled around with intermissions and I experienced breaks of more manageable days this is sadly no longer the case.
It’s very hard to be positive about this and say positive things that people love to hear you say… things like I am not the victim, I am a survivor and I am not my diseases. It’s hard to live these sentiments when every day becomes harder and harder and you can do less and less.
Ableist attitudes are a hard and oppressive walls to climb.
I used to think my positive attitude and sense of humour would make me impregnable to these diseases but I realize it’s not a magic pill for reality even though it is an ally in the battles that take place every day.
Today my life is a far cry from the life I had many years ago and just living is a constant struggle but it I still haven’t stopped trying, although I had to stop lying about it to myself and telling people what they wanted to hear.
Since I am almost always home now I have been looking for useful things that I can do and how best to use the abilities I still cling on to. I am currently entering my artwork in another art show and preparing for that takes time and energy.
I try to continue my advocacy as best as I can and write as honestly as possible. That is also hard in its own way as many people who know me seem to have had enough of my openness and turned away, perhaps because they feel tired of my writing and advocacy and there is now a very clear lack of support and encouragement from many of those who know me.
I feel no animosity at all towards people and although it has been very disappointing I have accepted it as simply being a reality of diseases and the consequences for choosing to be authentic about autoimmune life. I asked myself whether I regret doing what I have done and I only have this to say…
If being acceptable, popular and more loved means that I would have to have been silent and invisible than I would rather be truthful and rejected. I am actually quite proud of the courage and determination I have shown even though it has meant being alone. Few people will show this level of bravery anymore in this world of popularity, success and attention seeking.
I do regret the rejection that my husband has endured though and the way his value has been pushed aside and overlooked. He is a wonderful man that many people will never truly recognize and see since people seem to only want to distance themselves from the chronically ill and their carers.
Some people are now taking the attitude that I am the cause of where I am at and I am at this point in my life because I lack inner strength, don’t drink enough herbal supplements, my diet was never right, I took too many western medications, I don’t push myself hard enough, I am not positive enough or I have developed a defeatist attitude or mental disorder. Whatever they have chosen to tell themselves I am convinced it is has been to salve their own minds and consciences rather than being a accurate appraisal of what is happening and I really can’t afford to buy into whatever narrative they are choosing as I must focus all my available energy and strength for each daily battle. Although I think it also helps [them] to disengage and distance themselves… perhaps this is just human nature when some people are faced with things that can’t be rectified, wished away or that seem too difficult to cope with.
Despite the difficult realities of autoimmune diseases most fighters are some of the most hardy, brave, stoic, trustworthy, respectful, empathic and committed people that you will ever find in the world. Although I often break down in tears from pain I rarely cry about my life and what has become of me. I rarely experience poor me moments and I don’t live in self pity, however I continue to search for self belief and self pride in all that I do.
In recent months I have had to acknowledge that progression is something that can and often does happen for autoimmunes and new symptoms and battles are never far off and I must find peace with this somehow. I focus my energies into having the type of character that I would be proud to have and look back on as I now believe that this will be my true accomplishment in life.
I take pride in not hating or becoming bitter to all those that have gone and turned their backs. I am proud that I haven’t become an angry and resentful person despite all that I battle every day. I am truly astounded that I have worked hard on remaining loving, peaceful, honest, kind and respectful despite how the world (and others) may have treated me.
I have even found dignity, confidence and self belief in the darkest of times and the harshest of circumstances imaginable and it makes me more surprised than words can say.
It’s easy to love yourself when you are doing well, looking good, achieving goals and feeling in control but it is stratospherically hard to achieve this when you are struggling, hurting, falling, shaking, in pain and alone.
To all those out there who keep their heads held as high as you can and nurture peace and love inside you as best as you can I salute you!