He could not have imagined that some woman from the other side of the world would one day be standing in his memorial and feeling inspired by his immortal words.
I was struck by the power of someone who could look beyond the pain, the suffering, the ignorance and the social norms to want to make a difference.
It takes a certain personality and a powerful dream…
As humans we all tend to dream and sometimes we can imagine a goal or an idea so powerful that it has the strength to pull us along, even in the most difficult of circumstances.
Dreams and ideas take on special meaning and significance to the health impaired, they become the lifeline which we anchor ourselves in this world.
For a chronically ill mother the dream to be around for her children is a powerful one. For an Autoimmune man it may be the need to keep his family together.
Sometimes the strongest goals are those made when we are placed in positions where we have nothing left to lose and any step forward will be significant.
That’s where I found myself. That’s where my urge to be an advocate came from.
It became painfully clear to me that so little is known about Autoimmune diseases that something, anything, had to be done…
Even from the initial diagnosis of these illnesses life is incredibly difficult and challenging.
“Many people who have autoimmune disorders have a difficult time getting correct diagnosis. In some cases, people are mistakenly diagnosed with other conditions. Other times, doctors tell patients that their symptoms, which are often vague in the case of an autoimmune disorder, are just in their heads or are stress-related. The quest to find a doctor who can arrive at a proper diagnosis can be difficult.” – Mayo Clinic.
Doctors are clearly not able to diagnose Autoimmune diseases in a timely manner and therefore leaving patients suffering, alone and isolated. Sometimes this means the diseases may have become systemic before anything is done. As was the case in my battle.
Disgustingly, many sufferers are treated with painful rejection and attacks on their integrity. Women have faced the brunt of these types of behaviours.
“Some 40% of women who eventually are found to have a serious autoimmune disease have been told by a physician that they are complainers.” – Los Angeles Times.
After years of frustration, suffering, isolation and pain a diagnosis can come too late to prevent loss of relationships, careers and self esteem.
Even in 2017 Autoimmune diseases remain incurable and people are only just becoming aware of how many sufferers there actually are.
“In America alone there are more than 50 million sufferers officially registered… however there is reason to believe that there are many more than this still undiagnosed” – aarda
It would be reasonable to assume that if 50 million are registered in the US alone than those figures could easily be over 100 million when considered globally. That is a huge amount of sufferers; both physically and emotionally.
NIH estimates over 50 million Americans* have an AD. In comparison, cancer affects up to 9 million and heart disease up to 22 million.
NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).
many sufferers are left without adequate support from their families, the community and the medical system. Few people even take the time to read or research ADs even when their loved ones are affected! Perhaps because 75% of AD sufferers are women (aarda statistic)? I sincerely hope these serious diseases are not compounded by a sexist attitude.
And yet sadly …
Autoimmune disorders such as multiple sclerosis, rheumatoid arthritis, and type 1 diabetes are among the leading causes of death among women under age 65, according to a study published in a public health journal in America in 2000. It is safe to assume that our rates are similar in NZ and Australia.
My dream and the dream that has kept me going, and blogging, for years now is that this can and will change.
My dream is that we will no longer suffer from some of the terrible physical, emotional, financial and awareness challenges that people like me currently face, and all my Autoimmune Brothers and sisters alike.
Every little step counts.