The Pain Train

It’s been awhile since I have taken the time to write – aside from a few shitty, short poems that are irrelevant to the content of my blog and life.

I’ve been incrediblggi todayy busy this summer. Between managing my health and preparing for my final year of my degree, it’s been difficult to force myself to engage in hobbies which – yes – sometimes become a chore. We can blame the depression typically associated with unending physical pain and illness.

With my irrelevant excuses for my absence out of the way, I’d like to ramble about something that has been eating at me for months.

I’ve become this person who wears a shield of strength for those with disabilities and atypical neurologies. I have crafted this careful, firm and arguably profane voice which challenges preconceived notions and thoughtless ideas about people like me. People with Ehlers-Danlos, or whatever other rare disorder, or whatever. In doing so, I’ve been quite open and candid about my own illness. I’ve openly shared my symptoms, struggles, weaknesses and flaws. I’ve breathed stories of heartbreak and grief. I’ve opened up about my failures; failures to accept, or withstand my disorder, or as I have affectionately named it – my genetic lottery ticket. I let anyone who was willing to listen in about the days when I want to die and the days when the pain and fatigue is simply too much. Also, I’m pretty sure there is an incriminating Facebook post somewhere when I reminded everyone to remember I was a badass, after my first brain surgery. Drugs were involved.

But there is a casualty of war in doing so. I have yet to find any fellow zebra, or chronically ill person, discuss this casualty. I want to talk about it as candidly as I have done all other things.

People in my life have begun to minimize their pain and suffering. I have a wonderful cousin who is struggling to find a diagnosis for her unbearable back pain. She is probably one of the most compassionate and empathetic people I’ve met. She’s so different than I. She has far more patience, than I can bear, for people. She speaks kindly, while I laugh out obscenities. And here she is, when she talks about her pain to me, she says how it in no way compares to mine and she can’t imagine what I must go through, and how she feels she’s whining and complaining.

This is not okay.

I need to get something straight for people. Pain is pain. We all experience it, admittedly, at varying lengths and degrees. My chronic pain isn’t worse than my cousin’s. It’s different. I mean, sure, if we’re going to objectively measure (and objective measurements only really have a place in an ER or trauma ward), her pain is probably worse than that time you stubbed your toe really hard on the side of your desk that juts out awkwardly. It’s probably worse than the time I slammed my elbow into a door frame. Or dropped a hammer on my foot. My pain, on the daily, is probably worse than when your four year old skinned his knee when he fell off his bike.

But I’m not really referencing small, acute moments of our lives when something hurts. I know that time you stubbed your toe really fucking hurt, though. However, there is no badge for who has it worse. Let me be clear – I’m not saying chronically ill people are guilty of intentionally minimizing the pain of those around us. But our rare or rarely diagnosed disorders tend to sort of blot out the sun a bit, and sometimes it’s hard for that light to reach those around us who have different kinds of pain – chronic knee pain, a bad back, or that unending neck pain. My cousin was minimizing her pain. If I had to guess, it’s because I am so open about my pain, surgeries and hospital visits, so she had this clear image of what she thought ‘bad enough’ looked like and her pain effects her in a different way. Somehow, maybe, she felt her pain just didn’t match up to mine. I corrected her every time, if you were wondering. Her pain does. It sucks just as much.

Just because I have a genetic disorder you’ve never heard of, doesn’t mean your chronic back pain doesn’t hurt the same way. You deserve a space with me, with your friends, with your family to talk about that pain, how it effects your daily life. You don’t need some life-altering diagnosis (MS, GP, EDS, blah blah blah) to be a part of the pain train.

It’s not just my cousin. I’ve caught my husband minimizing his pains and aches. I’ve caught friends online doing it. I know this comes from a place of love. These people are trying to express they understand the severity of Ehlers-Danlos and what I experience. I do appreciate that sentiment. I appreciate the love and care. It’s just not healthy though – for them or me – or let’s be fucking real here – anyone. We can experience pain together and commiserate together. Don’t hide in the shadow of my illness because you feel your pain doesn’t meet the metric for shitty enough. It does. I want to be there to hold your hand. I want to be with you, in that sea of shit and pain, when it keeps you up at night, when it makes you cry, when you just don’t know if you can handle it anymore – I want to be the person you come to because I get it.

We need to do better to make space so our friends and family know that, while our illnesses consume our lives and dominate our dinner-table conversation, their pain is just as valid and there is no need to minimize it. We don’t own the patent on the fuckery that is pain. It isn’t exclusive to our weird diagnoses. It’s the shitty side of the human experience, and we all deal with it. This planet is fucking huge. I think there is enough space for everyone’s suffering.

This post is dedicated to Katelynn.

I would rather… cancer.

This may have some triggers for anyone who knows someone with or has lost someone to cancer. Please understand, I recognize every struggle a person may face is their own – it is the worst in the world for that person. I do not wish to accidentally invalidate anyone dealing with cancer, or having to had dealt with it at some point. This is merely my perspective on my own experiences and what I wish I could change, regarding my frustrations with lack of understanding, empathy and compassion towards chronic pain and chronic medical conditions.

I’ve had family who suffered from some form or another of cancer. I’ve had friends. And friends of friends. I’ve seen the Think Pink advertisements in grocery stores, department stores, etc. I’ve even walked to “fight” cancer in spirit. I’ve donated money to cancer research causes. I’ve shared stories of strangers on my Facebook or used social media as a platform to raise awareness about cancer.

Why, then – if I am acutely aware of the horrors of cancer, would I rather cancer?

For the exact reasons above.

Everyone knows about cancer already. It was one of the most talked about illnesses, aside from perhaps heart disease, in the United States. There are always fundraisers for cancer, research grants being donated and made in the name of cancer and there are always marketing ploys to spread awareness. In the recent debates against the DEA for legalization of marijuana and narcotics, proponents for legalization have said things like:

Even cancer patients are being denied their medicines, now!

Because, you know, those who will suffer lifelong illness and debilitating pain forever, until they die, for the rest of their time on planet Earth, every day, 24 hours a day, 365 days a fucking year isn’t bad enough for legislators and DEA to pay attention. Shit gets serious though, once we bring in those cancer patients!

Cancer patients, children especially, are already being martyred to death. Now, they are a champion for legalization, but they are not necessarily the largest group of sufferers that America is/has been systematically ignoring, marginalizing and denigrating to an existence of pain.

This is why, I would rather cancer. Because then my story would matter to the majority of media and society. This is the most infuriating and frustrating part – for me, living with chronic, incurable conditions that are progressive. Even worse, there is literally nothing physically visible that marks me as a patient with incurable conditions – which will progressively destroy my body from the inside out. My conditions are so sinister, so silent, that many doctors can’t even recognize the symptoms or warning signs early, so they cause permanent damage to my autonomic nervous system and pain receptors, which only makes things a thousand times worse. This is especially true because I was adopted and Ehlers-Danlos is often diagnosed when multiple family members present – because it’s genetic. And because I was adopted and in poor state mandated care, no one seemed to think it pertinent to evaluate physiological causes for my inability to walk at developmental milestones (often a major and primary marker for Chiari malformation). Moreover, there is so little funding and research/awareness nationally and internationally, doctors often are left playing GoogleMD (no, I am not fucking joking, I’ve had multiple physicians google these conditions). Finally, the worst part is, both conditions are likely far more common than society is aware. Chiari and Ehlers-Danlos specialists and researchers suspect there is a link between conditions and that both are incredibly common, just so often misdiagnosed or ignored, we cannot get accurate statistics.

Both Ehlers-Danlos and Chiari have been found in other mammals, even.
Here is a great story with a happy ending about a puppy with Ehlers-Danlos, who was taken in by a family with Ehlers-Danlos.

Here is an awesome story about a lion receiving surgery to alleviate symptoms and slow the progression of Chiari malformation.

So, I know cancer is shitty. It tears families apart and people die from it every year. You can see this on an MRI or CT scan. You get treatments and hope for an end (remission). You have people fighting so you can get access to palliative care. Doctors take you seriously. They can identify what is wrong and they can send you to a specialist, relatively easily. There are so few doctors nationwide who deal with EDS and Chiari it is not even funny. I have to travel out of state and go to a giant university hospital, just to be clinically evaluated, with wait times over a year. I probably won’t receive the right kind of care I need, until after that.  Hell, I’ve had to fight just to get necessary imaging tests. The only neurosurgery clinic within an hour that I can go to doesn’t have a neurosurgeon familiar with decompression brain surgeries. I will have to go to New York City or somewhere else.

I am not saying my struggle is worse, but that if I could have picked a different fight than this incredibly lonely and challenging fight.. I would have. This fight crushes every bit of spirit I have, every single damn day, and I keep fighting because I want to live and I want to graduate, I want to maybe have a kid, I want to do things normal 22 year old women do. And I hope, one day, there will be awareness walks and fundraisers for people like me. I hope one day, people who are bound to an existence of chronic, unrelenting pain and fatigue will receive the same level of compassion from our families, friends and doctors that cancer patients, generally speaking, get. I know there are struggles many cancer patients face. I know they experience denigration, lack of empathy and understanding, I know they have frustrations within their set of problems and I do not deny that. No one’s battle is easier. It’s just… different.

I would rather cancer. But this will have to do and I will make the best of this.

Thunderclap Awareness

This post is copied with the permission of the original author, a friend on Facebook.

I know EDS Awareness Month is officially over, but I’d really appreciate you all clicking to support this EDS Thunderclap campaign. If you don’t know how Thunderclap works, it’s really simple and amazing. You click to support via Facebook (or Twitter), and on June 15th at 12:00PM, everyone who has signed up will have a Thunderclap message about Ehlers-Danlos Syndrome posted to their timelines all at once. Can you imagine the awareness potential here? We could possibly reach 10,000 people or more, all with the click of a button and literally no effort on your part. It’s one of the best uses of social media I’ve ever heard of, and I’d love for you guys to participate. EDS affects 1 in 5000 people. We’ve had several people in our support group pass away from EDS complications recently, because many doctors aren’t aware of the risks associated with it and have never knowingly treated an EDS patient. There’s no cure for our genetic mutation, but if we can continue to raise awareness, the outcome in catastrophic events could improve. Please help!

https://www.thunderclap.it/projects/27295-we-are-stronger2gether?locale=en

I think Thunderclap is a pretty neat feature, I only just learned about it. So, if you could take the time to press the button that would help so much!