I was recently asked how long I go without thinking about my life threatening auto-immune disease Granulomatosis with Polyangiitis. A day? 2 days? A week? A month? A year? I actually laughed out loud in what can only be described as a mix of sarcasm and bewilderment. Was this person really serious? Did they really think it was possible for me to go more than a day without it crossing my mind? These are just one of the many situations that make you want to gut the human standing in front of you. Or at the least say "bless your heart" in my best southern accent. In a patient's eyes, asking that question shows not just nativity but stupidity. I know they meant no harm, but the reality is every question like this eats away at patients all around the globe and relegates us to second rate medical patients. Thousands suffer in silence. The disease itself is hard enough to overcome physically, but even harder emotionally because of scenarios just like this.
Why is it hard for us to go a day without thinking about our disease, even when on the outside all seems to be normal? Because it is systematic, incurable, and deadly. It doesn't matter how many times I repeat that phrase, every time that I say the word deadly sends chills to my soul. Since my diagnosis over 10 years ago I've unfortunately lost track of the number of patients I've heard about losing their life. There is remission for some patients, but over 50% of us will relapse, and with each relapse comes more tissue/organ damage. Though the treatments have come a long way in the last 20-30 years, there still isn't a known cause or cure. Even worse than the fear of relapse is the lingering chill of the grim reaper whispering that you may be next. It crosses all our minds. Even a steadfast vasculitis warrior like myself has to stare those cold soulless eyes in the face and say "not today!"
Recently a fellow Young Adult Vasculitis Ambassador, Meagan Carpenter, lost her battle. It doesn't matter how healthy and bright that person may seem, vasculitis doesn't care. The last time I saw her she was the same bright light that I met in 2017 at the International Vasculitis Symposium. I was the new kid on the block and I'll never forget how welcoming she was I arrived at the welcome table that year. When I last saw Meagan in July she was exactly the same. Cheerful, brash, honest, and funny. The type person that would laugh at the joke, "all of us are dying, some of us just faster than others!" But was also quick to shed a tear and give you a hug. While our paths mainly crossed in online groups, conference calls, and email chains, the fact that she isn't here anymore leaves our community and her family gutted.
This is why anxiety, depression, and panic disorders are a major burden for many vasculitis patients. When you are constantly confronted with your own mortality, it has a way of beating you down and making you wonder whether life is really a pleasure you are afforded. It doesn't matter how well you've conquered your own demons, times like these unlock their cages in your soul. It leaves you wondering, am I next? Is this sniffle the beginning of the end for me? Will this be the blood work or scan that tells me there is no coming back from this? Will this bout of depression be the one that breaks me and forces my own hand? These are unavoidable conversations in the darkness of our minds. This is why I have All Hope is Gone splattered across my chest. Because sometimes all the hope and desire in the world can't save you. For most this seems depressing, but for people like me, it's freeing. It's having no way as your way. It's being content with each and every day you have left on this flying rock. Because all the hope in the world won't undo the damage to my body and mind. All the hope in the world won't develop a cure. So until then, all us patients are left with are slightly less shitty treatments than we had 10 years ago. We are thrust back out into a world that doesn't understand us, so we band together, listen to each other, tell disgusting jokes, and bond over our shared misery. But along the way we inspire and lift each other up, because we are the only ones that can truly understand. And I'll take that love and support over hope every single day!
Why is it hard for us to go a day without thinking about our disease, even when on the outside all seems to be normal? Because it is systematic, incurable, and deadly. It doesn't matter how many times I repeat that phrase, every time that I say the word deadly sends chills to my soul. Since my diagnosis over 10 years ago I've unfortunately lost track of the number of patients I've heard about losing their life. There is remission for some patients, but over 50% of us will relapse, and with each relapse comes more tissue/organ damage. Though the treatments have come a long way in the last 20-30 years, there still isn't a known cause or cure. Even worse than the fear of relapse is the lingering chill of the grim reaper whispering that you may be next. It crosses all our minds. Even a steadfast vasculitis warrior like myself has to stare those cold soulless eyes in the face and say "not today!"
Recently a fellow Young Adult Vasculitis Ambassador, Meagan Carpenter, lost her battle. It doesn't matter how healthy and bright that person may seem, vasculitis doesn't care. The last time I saw her she was the same bright light that I met in 2017 at the International Vasculitis Symposium. I was the new kid on the block and I'll never forget how welcoming she was I arrived at the welcome table that year. When I last saw Meagan in July she was exactly the same. Cheerful, brash, honest, and funny. The type person that would laugh at the joke, "all of us are dying, some of us just faster than others!" But was also quick to shed a tear and give you a hug. While our paths mainly crossed in online groups, conference calls, and email chains, the fact that she isn't here anymore leaves our community and her family gutted.
This is why anxiety, depression, and panic disorders are a major burden for many vasculitis patients. When you are constantly confronted with your own mortality, it has a way of beating you down and making you wonder whether life is really a pleasure you are afforded. It doesn't matter how well you've conquered your own demons, times like these unlock their cages in your soul. It leaves you wondering, am I next? Is this sniffle the beginning of the end for me? Will this be the blood work or scan that tells me there is no coming back from this? Will this bout of depression be the one that breaks me and forces my own hand? These are unavoidable conversations in the darkness of our minds. This is why I have All Hope is Gone splattered across my chest. Because sometimes all the hope and desire in the world can't save you. For most this seems depressing, but for people like me, it's freeing. It's having no way as your way. It's being content with each and every day you have left on this flying rock. Because all the hope in the world won't undo the damage to my body and mind. All the hope in the world won't develop a cure. So until then, all us patients are left with are slightly less shitty treatments than we had 10 years ago. We are thrust back out into a world that doesn't understand us, so we band together, listen to each other, tell disgusting jokes, and bond over our shared misery. But along the way we inspire and lift each other up, because we are the only ones that can truly understand. And I'll take that love and support over hope every single day!
I myself do not have a Vasculitis disease, I can only imagine the daily struggles, I can only "pretend" to put myself in your shoes. My wife has had GPA for 18 years. 1 week into us meeting I went to doctors appointment to meet the surgeon doing her 2nd nose reconstruction surgery. I see everyday what she goes thru on the outside, but it doesn't show what this silent disease actually does. I'm beyond inspired by her, you and everyone else fighting what the rest of us can "only imagine".
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