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:
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.