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.

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Patients Rights and Responsibilities.

This post is dedicated to a fellow zebra – Isaac. You know who you are dude. I hope these words bring you commiseration, so you can begin to move forward in this challenging time of your life.

America is sick.

Wellness isn’t a right anymore. Health isn’t a fundamental component of autonomy or life. It has become a commodity. And this idea is suffocating the lifeblood of our nation. This concept has us bleeding out.

One in three American citizens will experience chronic pain at some point in their life – although some of these people will never recover (American Academy of Pain Medicine). This is the most common source of physiological discomfort and illness. This is more common than heart disease, diabetes and cancer combined. The fact that near 1/3rd of our fucking population suffers this disease and it is under-treated is disgusting.

Google chronic pain. Seriously, go do it.

But here, if you’re too lazy to open a new tab and type, this is the top search fill-in:
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Still don’t think this is problematic?

Let me just set this boundary real quick. If you ever tell me chronic pain is in my head (or anyone and I witness it), that it is fake, that I am just stressed, or it isn’t an issue – I swear to all of the fucks, I will verbally rip you a new asshole. It will not be pleasant. Dismissing such a prevalent and real disease, which destroys every aspect of your life, is never acceptable. I don’t care if you shit gold, if you are a doctor or my family member. It is never okay. It will always be unacceptable.

Got that? Good.

Okay, so, you know how whenever you go to the ER or doctor’s office? If you glance around, you’ll usually see little signs that say Patient Rights & Responsibilities. These snazzy little signs probably don’t get read as often as we like. But they are posted to remind healthcare professionals and patients alike that we have guaranteed rights in the doctor’s office and ER. These rights and responsibilities are fundamental.

You have the responsibility to notify your doctor with accurate, factual and honest information, ask questions if you don’t understand, inform your provider if you don’t intend to follow through with their medical advice, cooperate with healthcare providers, respect the rights and privacy of other patients and accept risks if you do not follow medical advice.

You have the right to privacy, care and safety, proper evaluation, proper pain assessment and pain management, be free from abuse or restraints (unless you threaten the safety of yourself and others), be given appropriate medical information, treatment, risks and options, seek second opinions and to have a say in your care.

This sign indicates patients should have autonomy in their care. But that’s not quite true. Humans are fickle little shits – cognitive biases get in the way of patient autonomy and care.

You see, we live in a culture that uses apparent signals to determine the validity and reality of pain. This is a mental error, and it is ableism. It is very real, it is incredibly dangerous, and it is exceedingly frustrating for those of us with chronic pain/illness. Basically, if you don’t look  some certain way, healthcare professionals, strangers, family and friends will think you’re lying, you’re exaggerating, or faking. This is an illusory correlation. People assume two concepts or things are related, even when they may not be. In this case, pain = physical indicators such as broken bones, bleeding, and other very obvious physical signs. This happens because we tend to mostly remember dramatic examples of pain (broken bones, bleeding, etc).

So, for many chronic pain patients, the reality is they go to the doctor hoping to receive adequate pain management. This may include a combination of cognitive behavioral therapy, psychiatric medications to manage depression/anxiety which is physiological in nature (caused by pain/illness), physical therapy, massage, sleep aides, and pain medications – any good doctor will use ALL available tools to treat and manage pain. But patients are often stonewalled and met with disdain, disbelief, ableism and dismissal.

Some fellow zebras shared the humiliating, discouraging and dehumanizing things doctors have said/done to them, in response to their desire for adequate pain management:


‘You don’t need a doctor, you need a personal trainer.’ – Christine Langager

‘Well, if your joints are dislocating, it’s going to cause pain.’ but he offered no help. – Cheryl Boswell

‘Before I was diagnosed with bladder sphincter dyssynergia, my previous urologist insisted nothing was wrong and that I was making up all the urethral pain. She told me I needed a therapist and I was a drug addict for wanting my pain controlled.’ – Kiara Walker

‘There’s nothing I can do for you. This is just the life of an EDS patient.’ – Megan Beckle Hermsen

‘You know too much about this.’ ‘Women’s bodies are different, thank goodness.’ – Andrea Hubert

‘I don’t have a magic pill to help you.’ – Kilynn Marsengill

‘Why do you want a diagnosis so bad? It’s not going to change anything.’ 
‘I’m sorry I don’t have some kind of magical powers that can fix you.’ – Frankie Frank Christensen

Pain management is fundamental for the safety, sanity and health of all human beings. Without appropriate pain management, patients cannot expect to function or take part in society. This leads to a disproportionate amount of economic difficulty, emotional crisis, doctor-related PTSD and anxiety, physical agony, sleep deprivation, and often suicide. Pain management is a human right. Every single person has the right to physical security and the right to not exist in constant physical agony, if we have the technology and medicine to prevent it. This is the only ethical way our society can move forward.

A special thank you to my contributors from the ‘Ehlers-Danlos Support Group’ on Facebook. You are the reason I write – so that we may be heard. We cannot accept the status quo. We cannot be silent.

Last Day (Not)

It is officially the last day of May and coincidentally, the last day of Ehlers-Danlos Syndrome awareness month. It has been a good month and I have been able to connect with many people, illustrating the stark reality that is chronic illness. But we are not done, this is a lifelong fight for awareness – not just one month out of the year. However, in the spirit of awareness, I hereby dedicate this final post to the final day.

Wouldn’t it be so nice if we could go, “Today is the last day of our illness. Tomorrow is the first day of health, happiness and life.”?

I noticed some people in my life do not like discussing depressing prospects. They say things like, “Wow, S. that’s really sad…” and they seem uncomfortable, like maybe I should just stop writing and talking about it. Yes, well living with chronic illness is very sad. It can also be very happy. I need to talk about it, for myself. If you are uncomfortable with the realities of life, which is pain, suffering and death, then perhaps you should reevaluate your position in life and yourself. There is nothing, in my eyes, healthy about turning your back on someone, or some situation because you are uncomfortable with depressing stuff. Life is a mixture of sadness, pain, failure, anger, resentment, but also happiness, success, empathy, love, laughter and greatness.

In any case, I will not stop talking about my life, my illness – the depressing stuff or the successes, happiness, love and laughter.


Quick side bar, I would like to link a really awesome post by a fellow zebra. Her struggle is very different from mine, however, she also suffers from hypermobility type of Ehlers-Danlos Syndrome. I am linking her post to illustrate the vast differences between patients, even patients with the same type of EDS. You can read it here. She is a young woman, a bit younger than I, who has severe gastrointestinal manifestations in her Ehlers-Danlos, nearly killing her, resulting in feeding tubes and a very limited life. She is UK based and has been writing to share her story and raise awareness about how sinister this genetic disorder can be, especially if left unchecked.


So, as a part of my integrative care for Chiari and Ehlers-Danlos, I started seeing a psychologist. I have already undergone some intensive therapy, spanning over two years, including a couple facilitated support groups. But, in the interest of showing my primary doctor how serious I am about integrative care, I sought out a clinical psychologist to manage the social and psychological implications of living chronically ill. She is an okay psychologist. It isn’t so much that I feel I need to see a therapist at this moment. I am in the best place I have ever been in my life, emotionally, socially and psychologically. But the truth is, living incurably comes with random, unforeseen complications. That is the very nature of both of my conditions.

Anyways, in the second or third appointment, she asked me, “What is it like? Living with these conditions?”. She stared at me, taking a drink from her coffee while waiting patiently for an explanation. I just sort of laughed and stared back at her for a moment. In the previous appointments, I had to tell her my history, including medical. In 2011, I underwent 6 months of self-administered chemotherapy for liver disease (no, not cancer).

So, after thinking for a moment, because I genuinely wanted her to understand, I said “it’s like chemotherapy, that doesn’t end”. She seemed shocked, like as if my previous descriptions of EDS and Chiari had been said in an alien language, or maybe that she thought it wasn’t as bad as it sounded.

“You know, you deal with splitting headaches daily, joint pain daily and random, unprecedented bouts of nausea and even vomiting. Standing up hurts. Sitting down hurts. And you’re just so fucking tired, like you haven’t slept.”

I think she finally got it, when I related it to my experience with chemotherapy.

The description stands true today. But I must admit, my symptoms have actually improved as of late, headache aside.I had an incredibly bad flare in the end of 2013 through the beginning of 2014. I used a cane and I almost never left the house. My husband had to help me shower many days and the pain made me cripplingly depressed. Things began letting up in the summer of 2014 and although it still sucks, it all still hurts, I am not that bad (for now). The reprieve has been nice and finding answers has definitely helped tremendously. Things are still improving, but only because I am finally getting the medical attention I need. My primary prescribed me beta-blockers for the associated autonomic dysfunction and just in the a week of being on this new medication, I am already improving immensely. I am finally sleeping better, my blood pressure and heart rate aren’t doing gymnastics anymore, and I don’t feel like I am going to pass out every time I take a shower. And that is just one facet of my illness being treated. I can’t imagine what will happen when I am under the care of a clinical geneticist. This is great. I can only hope for such improvement when I go to John Hopkins.

Don’t get me wrong, I still have my struggles and I will continue to struggle in the future. You will never be able to ask me, “So are you better now?” and get the answer yes. That will not happen. There is no cure. This is progressive, but my victories are moments like these – moments where it is manageable, moments where I can do things and be happy. I know this summer I will begin to have even more victories, because I will have my brain surgery(ies) needed to alleviate my headache and to slow the progression of the Chiari malformation. Moreover, I will continue to make connections with wonderful, supportive people who do not shy from the gritty-shitty aspects of life.

I have been fortunate since moving to Virginia, especially so. I have made some amazing new friends, some through support groups and some who work with my husband. A special shout out to my best friend from Alaska, you know who you are boob, for always enduring my 2am antics and just wholly loving me, supporting me and of course for always being there, when I needed you the most! Another quick shout out, to Fred, a new connection who can relate in so many ways to the struggle that is Ehlers-Danlos. A new friend who I know will continue to be there and who will endure through the same battle, who displays such astounding empathy and who checks on me regularly!

Finally, my husband who has shown me true strength, compassion, empathy and death-do-us-part love in our marriage. I know I would not have survived, thrived and lived to become the woman I am today without my husband. He stole my heart over six years ago. He gave it back, in better condition than I could have imagined and he has truly endured through the struggles many relationships may never face. He has shown weakness, strength, compassion and he has lifted me up with his love. I am so very lucky to have him in my life.

Today is the last day of Ehlers-Danlos awareness month. But it is not the last day of my illness. It is not the last day of voicing the pain and the victories I have and will face.

A Shameless Plug!

Okay, so I have been secretly working on a project. Until recently, I did not realize how attainable this dream was going to be. Now I have fully actualized it and I am ready to divulge a small portion of this dream. I have secretly been working on a non-fiction account, illustrating the existence that is chronic pain and illness. My blog has been a great way for me to feel and chronicle my life in a cathartic manner. But the reality is when it comes to pain, those who live it 24/7/365 rarely have a voice in the discussion about chronic pain, how to treat it, how to cope with it, etc. So, now I hope to give the millions of us out there, who silently suffer, a voice in the discourse!

A snippet from my project:

It is not my goal to alienate allies and supporters of chronic pain patients, but to illustrate to the masses, including our allies, the little things they may say or do that crush our spirits. I live in a state of empathy and the majority of the time, I recognize people mean well when they say things to me. Unfortunately, most of the time, they ignorantly presume telling me “Wow, you’re such an inspiration!” is somehow helpful, consoling, or will make me feel better about myself. Pro-tip: it isn’t, it doesn’t and just stop. This is a bitter pill and I am sorry, it will hurt, but try not to take it so personally. You have been conditioned by social media to martyr cancer patients, children with leukemia and other scary medical conditions. Try, if you are able, not to internalize this. But I have the right to define my existence – you have the right to define your own. This state of being is entirely frustrating, overwhelming and exhausting.

Enjoy! More to come, I promise!

– S.