It’s Not A Competition –
As an keen advocate for Autoimmune (and Chronically Ill) sufferers, or which ever title you prefer, you wont find someone more committed to helping the cause of those who have life long illnesses, pain or health struggles but I have to ask something of the community too; please remember it’s not a competition.
As a member of dozens of chronically ill support groups and various other websites I have had the awful honour of meeting some of the most wonderful people in the world. People who have spent their lives living and loving with some of the most debilitating diseases. It’s not easy and I understand that it can change us in so many ways.
I have spent the last decade trying to bring integrity to the lives of those who suffer in silence and have illnesses which most of the world regard with suspicion and ignorance. I feel as though there have been some real victories thanks to the stoic contribution of some very brave souls, the proliferation of multimedia and some celebrity sufferers who have got some well needed exposure to the cause.
I feel as though we may finally be on the cusp of some well needed public awareness and empathy but it is even more important how we proceed from here…
We have started to connect with each other in very real ways and have even provided comfort and support during some very dark times which is why nothing hurts my soul more then when I see fellow Autoimmunes playing the “I am in more pain than you” game or “My illness/es are worse than yours.” It hurts because I can feel it costs us ground in the fight for credibility and solidarity. It hurts us all.
Many of us would like to share in the empathy and support that many other illnesses receive ie, cancer patients, Alzheimer’s, stroke victims, Asthmatics etc but it has been a lot harder for Autoimmune sufferers and those they call ‘invisible illnesses’ for reasons that I can not explain. Although our suffering or disease activity may be happening inside our bodies and not always ‘visible’ to the casual observer however I fail to see why this means that we needed to be treated with suspicion or disrespected. Cancer and MANY other illnesses are not overtly visible but are still respected, so its not clear to me why the world reacts in the way it does, but it doesn’t change the fact that it does.
So there is much to do to educate and inform the world. We have to have our game faces on.
This is not the time to argue amongst each other and jostle for position or pecking orders. It is time to unite with respect and dignity for all.
Which is why I am returning to the point I want to make here to my fellow Autoimmunes all over the world. It is NOT a competition where the one who has suffered the most, lost the most, hurt the most and tried the most medications will win some, as yet undisclosed, award. Truth is we wont win anything at all and more importantly, we will lose much much more.
Now is the time to come together with respect and empathy. Support each other. Give dignity and compassion to each other. Unite. Inform. Educate. Don’t take our focus off the real prize; better treatment, support, research and, hopefully, one day a cure.
Lets show the world we mean to win this ‘war’ by standing strong together and not turning on each other and fighting between us. We are all so different in our disease activity and progression, for reasons that we don’t understand now, but it doesn’t mean that we are any less entitled to support and treatment. Whether you are ‘high functioning’ or the most disabled and immobile sufferer, our bodies are still waging war on itself and it needs medical professionals, patient advocates and medical research all aimed at solving these very complex problems.
But we need to do it together, working as a team. We are all over the world and with numbers greater than heart diseases and breast cancer combined. Although there might be many different labels and classifications of Autoimmune diseases (currently over 80) we still currently rely on the same medical protocols and the same hope for remission and disease control. A fair guesstimate would put us in the 100s of millions all over the world if there are over 80 million in America alone. I think we have somehow been blinded by how strong a group we are and how much potential we have for making a positive difference to our struggles if we dare to combine our hopes, our energies and our focus.
Its NOT a competition, its an opportunity to move forward.