The story of Diane
Each year I “celebrate” Rare Disease Day which was February 29th. Celebrate is a weird word to describe it, but it a day that I remember that I am not alone in this fight with a rare disease. I have Relapsing Polychondritis, which only 3 in 1,000,0000 people get. I have never met another person with my disease. Like many of us who are rare, no one would ever know I was sick by looking at me. We have an invisibe disease and often become a truly invisible group to the world.
The current Covi-19 outbreak puts a spotlight on how invisible we really are. Unfortunately, to society, law makers, politicians, and community support systems, we are group that doesn’t really matter. We have no rights or protections to help us with our special needs. I could write a book about the difficulties getting medical care and insurance coverage for treatments of a rare disease because it is nearly imossible. Instead I will focus on the current outbreak of Covid-19 and how it effects many of us who are already fighting a rare disease. Many of us that are rare have to take medications which harm our immune systems making us more at risk for getting infections and other disesases. And then if we do get sick, even with a simple cold, it often leads to something more serious because of our inability to fight infections. So everyday I hear the same message on the news. The Covid-19 virus is spreading, but for 80% of the people who get it, it is a mild illness. And the 20% that do have a more serious illness, most of them recover. Only about 2.5% of the people that get it die, and most of those have pre existing medical conditions that put them at risk....and then the news goes on, without ever mentioning this group, this 2.5%, as if they don’t really mater. Instead, that claim and statistic is meant to put everyone at ease. “Oh, I’m ok. It’s only sick people who are dying or struggling in hopsitals”. Well, many of those sick people include those of us with rare diseases and medical risk factors that put us in danger of infections. We can not all be identified by what we look like or where we live. But there are over 6000 rare disease and about 5% of the world population has a rare disease. Can you imagine how the news would change if all of us who are rare or had other risk factors had one defining physical characteristic that identified us as a group? Or we all lived in one precise location? If the Covid-19 was killing this one special group of easily identifiable people with an alarming rate, then steps would be taken to protect that group of people. And suddenly that group of people would matter. At least, there would be compassion in the voice of the government and newscasts when they speak about the one special group of people that are dying. It would not just be conveyed as “sick anyway” and therefor doesn’t matter. We as a group, we would matter. But most of our diseases are invisible. Our struggles with treatments are invisible. Our weakended immune systems are invisible. The pain and suffering caused by our disease is invisible. And our unity is invisible because we span ages and continents like no other single group. Because of all these reasons and more, we become so invisible that we do not exist as real and important people…. and we do not matter. So when the news gives accounts of the death toll of the Covid-19 and then adds that most of these people were sick anyway, please take a moment to remember that “sick” person does matters. It is just as tragic to lose that person as it is the person next to them that does not live daily with a chronic disease. Everyone matters no matter whether sick or not.
On a personal note, that sick person is me, and I do matter. I matter to my kids. I matter to my sweet and devoted furry friends. I matter to my students and my community. I may be chronically ill, but I matter. And because I matter so does every individual that has a rare disease or other risk factor. We matter and we should be protected like any other identifiable group of people would be if they were facing a high chance of serious consequences from an outbreak. What would it look like if we mattered? Well, the people dying worldwide that were already sick would also have a story that was told. Just like the people who are well who face tragedy, people who are in the “at risk group” have families, loved ones and contributions to society they have made but their story is never told. The group is just summed up as “medically at risk” with no personal stories….ever. I live in Washington state, which is making news because we are the first state to have a man die of Covid -19, but he was medically at risk anyway says the news. So we don’t think of him as someone’s father. Someone’s friend. Someone who mattered. If those of us at risk mattered, then policies and guidelines would be different for us. For example they would recognize that the risk for the rare person who is immunocompromised or a chronically ill person is not the same as the rest of the population. The school I teach at has its first community case of Covid-19. If “medically at risk” people mattered as a group, when there is an outbreak in a school, the students and staff with these risk factors would be warned and given different guidelines and support for when to come back to work or school. But this is simpy unheard of. Because of our battle with a rare disease to begin with, many of us like myself have used most of our sick leave already. But this is never a consideration by policy makers and human resources, and we are expected to risk our lives to go to work and school if we need to support ourselves and our family. Imagine if every person who had freckles was in danger of getting seriously ill or dying from going to school, then those people would have the support they needed to stay at home. They would not be overlooked and expected to risk their well being to do their jobs as a student or a teacher. But, we are invisible because we all so different. No outward sign unites us. And no one cares to know our individual stories and make provisions for individuals. When the public leaders say that this isn’t going to be too bad if you are healthy, they would then talk about precautions for this group of people that do need to worry because they are not healthy. I have been reading the media for information, but help and support for this group of people is rarely if ever mentioned. In the face of this Covid -19 crisis, we truly are an invisible group that doesn’t matter to the world. Our sole purpose in this crisis is to make everyone that is “normal” feel safe. But, we are more than that. We are people that matter!
That’s what Rare Day is all about. Trying to bring equity to the people around the globe, young and old, who face unique challenges daily because of their condition. I am rare but I am not alone. I will never be able to stand on a corner with 10 other patients with Relapsing Polychondritis demanding that insurance foot the bill for the drugs we need to stay alive or that I should not be required to work in a situation that is very risky to my well being. But I can do that in some way if we who are Rare work as one group. That is why there is Rare Disease Day. But of course it is not enogh. I have even by laughed at by an internet friend asking if Hallmark made up this day too to sale more cards. This person went on to ask why would there be a certain day for something so unheard of. But that is exactly why we need a day because we are so unheard of, and so unseen and so invisible. Look around. Listen. Learn. Be aware. Can you find the invisible people that surround you? We are everywhere in small numbers. And, because we are invisible to most we need your help in spreading awareness and equity to everyone who is rare.