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.

Advertisements

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!