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.

Stuff and things.

I’m too tired to think of a clever slug for this particular post – but I have thoughts I really want to get out. It has been a pretty busy couple of weeks, for a lot of reasons.

I am attending college and since we recently moved (again) I lost credits. It’s been nothing but an uphill battle to get my freaking B.S. but, it finally seems like I will get to finish. Between financial difficulties, being in the awkward place between ‘poor’ and ‘middle class’ where you can’t afford to pay your way (and you know, still eat), but you apparently make too much to get aide, my health and other factors, it’s been fucking ridiculous.

You see, in high school we were told a degree only takes 3-4 years, but most people take 5 years. I was like “I’m not going to be that person! I’ll do it in 4!”

I was that person.

But not because I was indecisive, or unmotivated. But that life literally threw everything it had at me. My freshmen year I attended full-time, worked 2 hours below full-time at Walmart to pay for school, and chemotherapy for liver disease. After my first semester, I got married and moved to Alaska with my husband. I started back up the next fall and struggled with increasing pain, incompetence from doctors and ensuing depression related to the fact that I was a 20 something in inordinate, inexplicable pain. In 2012, I attempted suicide because I was in so much physical pain and I had been told by various physicians it was in my head – I wanted to die. Society had failed me. And living in pain without answers was not something I was ready to do. Somehow though, my husband managed to literally and figuratively save me. All this time, I was attending school in Alaska. It was still a constant battle with physicians and my own feelings of failure, inadequacy, grief and anger. I did my part though. I went to therapy. I got help. I kept fighting. In 2014, I was diagnosed with a rarely diagnosed brain condition – and I was dismissed as a patient by my neurologist because she was misinformed and incompetent to the nature of my condition. Puzzle pieces began falling into place. A physical therapist noticed my extreme range of motion and the words ‘Ehlers-Danlos Syndrome’ were uttered for the first time.

But then my husband was restationed back state-side in Virginia. I continued school, worked part-time at a child development center to earn some money so we could move, and put my health on hold. I still attended even during my move to Virginia. And unfortunately, because I had worked, I lost most of my financial aid and was only able to attend half-time this last year (which worked out semi-okay). So I started at my third university and in my first semester here in VA, underwent my brain and neck surgery last November.

This most recent semester has been a whirlwind with recovery, doctors appointments and decisions. Now, it’s almost the end of the term, I’ve managed to sort my financials for my final year of school (five years later, dammit) and now… I have big decisions to make. You see, I’ve wanted more than anything to get to go to graduate school. I’ve looked into PhD programs that grant assistantships and waive tuition.

But yesterday, I had an appointment with my new neurosurgeon – I have two, I’m such a lucky duck – and learned my MRV (magnetic resonance venogram) revealed I have narrowing of the blood vessels in my brain. This explains the new pressure headaches, vision loss, and other array of horrible symptoms I’ve had. Sadly, this is pretty common for patients with Ehlers-Danlos Syndrome. EDS effects literally every system in the body, including our blood vessels. Mine are narrowing due to faulty collagen. This can lead to a number of things and the scarier, and more uncertain things: strokes and transient ischemic attacks. So, now, it’s the waiting game for my angiogram to get a better look at the vessels in my brain before we decide if I should get a stent to relieve pressure and help prevent further narrowing and/or blocking.

This would be a second brain surgery, although an endovascular type of surgery, still has it risks and still weighs heavily. I’m not scared about the surgery itself, but rather the looming uncertainty and consequence of the larger picture – the surgeon yesterday said something profound and sad.

“I can see you’re still very much in the beginning of your Ehlers-Danlos journey.”

No he wasn’t saying that about my diagnosis. He wasn’t talking about the pain and struggle I’ve already faced. He was talking about the fact that comparatively, I am still very well off and the deterioration, once it starts it is going to snowball so fucking fast, I will blink and suddenly, it won’t be quite so. I am a walking time-bomb. My body is waiting to blow. There is no question about if. It’s all about when. I could have years before my GI system shits out and I end up on a feeding tube. Maybe I don’t need another corrective craniectomy for ten years, but it will probably happen. Maybe it only takes until I’m thirty to need that cervical fusion that is likely in my future.

Until yesterday, I had no doubts about trying to get into a PhD program. But then after finally getting some sleep, I woke up so tired and the magnitude of those words washed over me. Is it a good idea to keep going? Do I need to be thinking of my health instead? Will I be able to handle it? What if I need another surgery during the post-doctoral program?

Goddamit. Now I am doubting everything.

I know my husband would support me no matter what. But that’s the problem. This man would carry me up our three flights of stairs if I asked, even if it hurt his back, or made his knees ache for days.

I just don’t want to live my life regretting my wasted potential. And I don’t know how to make myself accept that. Of all the limitations I know I have, this is one that I am just not emotionally or mentally prepared to accept.

Fuck.

To every nurse ever.

Dear register nurses, CNAs, and triage staff:

This piece is dedicated to you. You see, while you may not be doctors, you will have the power to make or break a hospital visit for a chronically ill person. You have the power to impact someone like me forever, whether it is in a positive or a negative way – that will be up to you ultimately.

I’ve been struggling to put this into words for a few months now. You see only three weeks after my brain and neck surgery, I ended up in the ER (this was in December). This was perhaps the most terrifying day of my entire life. I thought I was going to die.

I woke up with a throbbing headache. It was pretty bad but I assumed that maybe it was because I had missed my last dose of pain medicine. So, I took my medicine and managed to get some water down, before camping out on the couch. I was pretty miserable. I turned on Netflix and drifted in and out of sleep for a few hours. When I woke up, my headache was just as bad, and I began vomiting. Okay. So, it was pretty bad. But it was probably just the percocet causing nausea? Right? Wrong. I was stupid. I knew there was something wrong. But instead of just going immediately to the emergency room, I waited. I waited and it got much worse. I went down hill as the hours passed. Soon the vomiting was becoming non-stop. I couldn’t eat or drink. The pain was inching from an eight to a nine, something I had rarely experienced in my life. Moving hurt. Opening my eyelids hurt. Everything hurt. I felt like my brain was going to leak out of my ears. Finally, we hit the the twelve hour mark. I couldn’t even keep my medicine down to manage the pain. I was throwing up every few minutes. I start choking on my own vomit and my husband saw me turning blue, somehow I manage to get it down and gasp for breath. At this point, he’s like, “hospital now”.

It still hurts unlike anything but I am scared to go to the ER. You see, I’m scared because I’ve been mistreated in hospitals before. I beg my husband just to take me to urgent care instead and call my neurosurgeon who is one state away. He concedes and takes me to an urgent care clinic only five minutes from our house. They get us in pretty immediately. But my heart rate is through the roof around 120ish, I can’t stop throwing up, and I’m curled up on the table in the fetal position. And it’s pretty clear they do not have the equipment to care for me. As soon as the doctor sees me, she says I need to go down the street to the emergency room and she won’t charge us for the visit. She kindly gives me a vomit bag and hurries us out.

The closest ER, much to my chagrin, is a Catholic hospital. Great. Catholic hospitals are notorious for providing bad care, especially for women, but we can’t really afford to make the trek 20 minutes across town to the military ER. We get to the hospital and the receptionist is pretty nice, but she seemed a bit irritated that I was loudly vomiting into a bag. We barely get a chance to sit down and they bring us back into triage.

The triage nurse asks with an irritated tone why I’m there, and if I had consumed an energy drink in the last hours, because my heart rate was still about 120 and my BP was 150/90ish.

All right dude. We just told you I had brain surgery three weeks ago and I’m experiencing the most excruciating headache I have ever had in my life, and you wanna know if I’ve been pounding down energy drinks? Did you miss the part where I said I haven’t been able to keep anything, water included, down? How about the non-stop vomiting? As a nurse, please tell me they taught you what intractable pain was?

This is when I notice the intake room is fucking filthy. My stomach sinks measurably. I already regret my decision to come to this hospital, but I’m here and I know I need help. The triage nurse takes me back and gives me a gown to change into. My husband helps me in the bathroom change. I put it on backwards, intentionally, because he said he was going to hook me up to an EKG. I’m trying to make his job as easy as possible.

This nurse has the audacity to give me shit for putting it on wrong, like I’m too stupid to put it on right and it was uncomfortable to see my breasts, and I explain I was trying to make his job easier to attach all the wires. I have never been made to feel ashamed of having breasts by a healthcare professional ever in my life. I’ve been through some pretty humiliating procedures too and no nurse, male or female, has ever made me feel as this man did for my breasts being partially exposed. I’m sorry – but you’re a nurse. You cannot seriously expect not to be exposed to the bodies of human beings, including those of the opposite sex ever, even if you do work at a Catholic hospital. I think my husband can sense I’m regretting coming to the hospital now. The triage nurse hooks up the EKG and thankfully leaves. A new nurse enters the room and starts prepping an IV so she can give me zofran and two doctors enter with her. The doctors ask what’s going on and we explain I just had a craniectomy, C1 laminectomy, C2 laminoplasty, dural graft and cerebellar tonsil resection and I’m experiencing an excruciating headache, etc etc. The doctors leave to call my neurosurgeon for recommendations.

My new nurse is this sweet young woman with red hair. She warns me the dilaudid is going to make me feel like someone is sitting on my chest and that it’s going to hurt initially. This sweet woman holds my hand as she gives me the pain meds. Then she explains they are going to keep me for a bit while they figure out what to do. Finally sweet relief. I am finally not vomiting non-stop and she turns the light off as she leaves. She returns with the doctors after a little while, explaining they are going to get a CT to make sure I didn’t spring a leak, but that it was probably rebound from my steroids. The nurse sticks around for a few minutes chatting with my husband and I, pleasantly cracking jokes with me, and asking if I need anything. She treats me completely different than the triage nurse – with empathy, kindness and dignity.

I eventually a CT, and the CT technician makes me change my gown right way, because he also is made greatly uncomfortable by having the gown tied in front. I feel pretty gross and ashamed by this point. And I am starting to get nauseated again. After my CT, my vomiting starts back up, and it’s becoming uncontrollable pretty quickly. Thankfully, my nurse comes back and sees this. She has already given me the max dose of zofran but I ask her if she can get the doctor to give me more, because the vomiting is greatly aggravating my headache and it looks like we’ll be waiting for a bit longer. She gets the doctor to prescribe another dose and manages to get my vomiting controlled again. After awhile, the doctor reappears to let me know my CT looks great and that they spoke again with my NS, he said I was experiencing rebound and they prescribed a med-pack to deal with it. Finally, we’re approaching discharge.

When we got home, I asked my husband if he thought I was overreacting to how the triage nurse and CT technician treated me. He agreed that they acted very disrespectfully by shaming me, and agreed that the other nurse who took care of me was the absolute sweetest. I wish I had remembered her name, I would have sent her a damn fruit basket. Nonetheless, we decided we’re never going to that ER ever again.

You see nurses – you can make the absolute difference in our visits. When I got to that ER, I thought I was dying. I was almost certain I probably had a CSF leak, which is incredibly dangerous. Remember the power you have. Remember you might be the difference between a person choosing to seek help again. Remember to treat your fellow humans with empathy and dignity.

And to the nurses out there who already do that, thank you for everything you do. Thank you for all the blood, shit and piss that stains your clothing, thank you for saving our lives, thank you for holding our hands when we’re in pain, thank you for laughing at our desperate attempts of humor in our darkest hours, thank you for the overwhelming emotional burden you take on and thank you for being you.

 

Dear Friends,

I don’t know how many out there consider me as a friend. I know there are various shades of ‘friendship’. You have people who you talk to daily, or see regularly. You have people you know and you occasionally trawl their Facebook, just to see how they’re doing. And then, you have those people who are so close to you, they can feel your fire and they know you better than you know yourself.

I’m not sure which one I am to you. Maybe I’m the one where you just occasionally read my Facebook and like my ridiculous ramblings.

Whichever you are, there is something I need to tell you. Not just on behalf of myself, but on behalf of every person who lives with chronic illness – whether it’s Ehlers-Danlos Syndrome, or some other crappy lifelong condition.

I’m sorry that my illness takes up a better portion of my life. I know my Facebook feed is 75% cats and Ehlers-Danlos/Chiari related shit, 10% memes, 10% Tumblr reposts and 5% what the fuck is that! I imagine those sick pictures of my scars and boo-boos are probably getting old. It probably feels like most of your feed is filled with negativity. I promise, if I could have it another way, I would in a heartbeat. Please don’t give up on me. I want to hear about your new kid, or your new job. I want to know how you are. I still want you in my life. I want to see you and I want to make you laugh. I want to wish you happy birthday, merry Christmas, or whatever else. I want to be the person who wipes your tears away after a bad day and asks who I need to beat up on your behalf.

But please understand, sometimes I won’t be able to do that – because I’m a bit tied up putting my joints back in (literally), or cleaning up vomit because I didn’t quite make it to the toilet or sink. Sometimes I will be too tired for a night out, or to have you over. I can promise you on the days I am feeling well, I will want to see you or talk to you.

I am sorry for all the times I have cancelled, or will have to. I am sorry for all the times I slept through your calls and texts. And I am sorry that my life is a mess. That is not going to change anytime soon. But if you’ll have me, I will be the best friend I can be. Chronic illness has given me this amazing super power – empathy. I will always understand when you need to cancel, or when you’re too depressed, anxious or afraid to function. I’ll be there to hold your hand, literally or at least figuratively, when you grieve the loss of someone you love, or maybe when you get sick. I will make you laugh when everything seems so shitty and impossible, because let’s face it, my jokes help me survive my own situation. I will advocate for you when it comes to your health, safety and sanity. And no matter how many miles between us, I will love you and care about you.

Marriage & Illness

This post is dedicated to the most amazing, wonderful and caring person I know. He is my closest friend and my soulmate – my husband. <3

Chronic illness is hard. Marriage is hard.

You know what is even more challenging?

Both.

That is not to suggest abled couples don’t face their challenges, because every relationship has difficulties. However, there are additional factors in a marriage where one or both spouses are disabled.

I met my spouse in high school. He became my best friend before he was ever anything else to me. We got married six months after I graduated high school. Let me preface this by explaining – a week after I graduated high school I began chemotherapy for liver disease. But like four days before I started my treatment, my then boyfriend proposed to me (we had been together for 2.5 years by now), after graduating from BMT for the Air Force.  Of course, I said yes! But then we had to go our separate ways for awhile. He went off to tech school and I continued working, started college and continued my chemotherapy.

We married on December 19, 2011, the same day we officially began “dating”, our three year anniversary. Coincidentally, it was also four days before my chemotherapy ended! We have now been married for over four years and together seven.

Despite this being arguably one of the most stressful years, it has been the absolute best and most fulfilling years of our marriage. It took a lot to get here. The first three years of our marriage were incredibly difficult. For a blink of an eye, I was worried we weren’t going to make it. Not because of my husband, or myself specifically; but rather because our entire marriage has been built on the foundation of tragedy and neither of us were poised enough to deal with it in healthy ways. We both came from abusive homes. We both have struggled with depression.  I’ve struggled with health issues for the entirety of our relationship.

People said we were too young – I was 18, he was 19. People asked me if I was pregnant, as if that is the only sane reason to marry someone. People rolled their eyes at me. People are ridiculous.

I’ve loved my husband for a long time… even in the really rough years. He has been there for me in my weakest hours. He has fed me, bathed me, held my hair as I worshiped the porcelain goddess, held me when the pain was too much, stayed with me in the hospital after my brain surgery – he has done it all for me. I will be forever grateful for every day I have with him. He never ceases to amaze me with his compassion, kindness, affection and he never stops challenging me to be a better human. I love him more today than I did the day we got married.

Here is the best advice I have for chronically ill and their partners!

  • Communicate. This is seriously the most fundamental part of any relationship, not just marriage. If you’re feeling overwhelmed, tell your partner and make a plan to reduce stress/responsibilities so you can compose yourself. If you’re feeling insecure, angry, sad, upset, depressed, attacked, happy, whatever tell your partner. There is nothing too small to tell them.
  • Take care of your spouse. I know this one isn’t easy. As a person with chronic illness, you’re probably relying on your partner a lot – they may even be your caregiver to an extent. This is definitely the second most important rule to marriage if you’re chronically ill. Caretaker burnout is a real and it is crucial to prevent this, for the safety and health of your partner. Make sure your partner is eating, sleeping and getting down time from you, your illness and caretaking. This might involve asking family and friends for help, or hiring some hands, so your partner can have time out. I’d strongly recommend talking to your partner about attending therapy or a support group, so they have additional resources at their disposal (also, you should consider therapy/support groups too, you both need third party people who you can rely on).
  • Establish your boundaries clearly. Boundaries are there to protect you from other people, but also to protect you from yourself – so you don’t ever have to compromise your mental and physical well-being for another person. This can be as small as you not wishing to discuss something if the other is yelling, or as big as choosing to get something like a DNR. And remember, boundaries are a two-way street. There may be things your partner is uncomfortable doing for you and that is okay. This goes back to the first tip – communicate! You need to talk about these boundaries, or they don’t work.
  • Check-in with your partner every single day. This one is so simple! There are lots of ways to check in – “how are you?”, “did you have a good day?”, “is there anything I can do for you?”. This goes both ways. Ask your partner how they are doing mentally, emotionally and physically.
  • Use words and actions of affirmation/appreciation. You love this person. Make sure they know this and thank them for their efforts in the relationship, and they should return the favor. When I had my brain surgery, every day, I thanked my husband for making sure I took my medications, ate and stayed clean. Now that I am more able, I thank him for being so patient with my recovery, or for supporting my passions. He responds really well to words of appreciation. Your partner might be a bit different, so you’ll need to tailor this to your marriage individually.

These are the broad strokes of marriage and are fundamental for all relationships – but the chronically ill face unique challenges. Remember, it’s a journey and some days things won’t be easy. It is okay to need help, to reach out and to struggle. It is okay to be vulnerable with your partner.

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:
Untitled

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.

Rare Disease Day 2k16

Rare Disease Day is the one day a year I get to feel special.

Okay. No. I prefer self-deprecation over ego-inflation. But seriously, as a person with Ehlers-Danlos Syndrome-HT, this day is pretty important to me. Ehlers-Danlos is still classified as a rare disorder. I didn’t have ‘confirmation’ that I had EDS-HT until November 2015. But I had suspected for almost two years prior to my diagnosis. Fortunately, I had a jaw specialist put the puzzle pieces together, indicating it was fairly likely I had some type of EDS – only a geneticist or rheumatologist with education in Ehlers-Danlos can clinically and genetically evaluate for EDS. Prior to seeing her, I was a medical mystery, presenting with vague and challenging symptoms, a broken medical history and a desperation to get well.

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Because this disorder is considered rare, unfortunately, general physicians aren’t really taught to fully consider the impact of a multi-system disorder. This is an institutionalized problem in the medical field. We are called zebras. Fuck, even our symbolic awareness color for Ehlers-Danlos is zebra print.

Why?

When you hear hoof-beats, think horses – not zebras.

This little mental shortcut is nice in theory. I mean, you don’t want to assume every person in the ER or doctor’s office with a tummy ache has rare disorders, or diseases. It would take too long to test every single case. It would cost too much. But the problem is anyone who is rare has become accepted collateral damage. This theory sucks for us.

It took over eight years for my fucking diagnosis.

EIGHT. YEARS.

Take a moment to imagine living with what feels like a flu, magnified by 10, every single fucking day for eight years without any rhyme or reason. Take a moment to imagine being told a list of humiliating and dehumanizing things:

  • You’re a woman. You’re supposed to be in pain.
  • You’re just depressed.
  • You’re just stressed.
  • I don’t really think there is anything wrong with you.
  • You’re probably fine.
  • You have anxiety. Deal with it.
  • I can refer you to a psychiatrist.
  • I can’t give you pain medicine for that.
  • I don’t feel comfortable treating you.
  • You know, I can tell there is something going on, but I really don’t know what. Your tests are fine.

It isn’t really the fault of my various doctors. It’s the education. It’s what they are being taught in school. They are taught rare means almost never. And this cultural idea that a patient can’t be informed, educated, science-skilled and qualified perpetuates the misinformed idea that rare = almost never.

The funny thing is, since I’ve known I had EDS, I have remembered moments of my childhood that indicated I was sick (even though my symptoms hadn’t quite reached supernova). I think I was like seven or eight. We had this little trashcan under our sink. And it was my job to take it out to the dumpster. There was a can in the small, thin plastic bag. As I carried it down the flights of stairs and out into the street, as I walked towards the dumpster, I bumped the bag against my leg. The can sliced out a pretty nice chunk of flesh. The scar that formed was… disgusting to say the least. For years, I was so ashamed of the nasty scar on my right knee. At first, it was this icky purple-y color and raised.

It looked sorta like this.

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It took over a decade for that scar to smooth out and completely heal. That is typical of EDS patients with skin manifestations. Some scars will always be hypertrophic. And my legs always hurt as a kid. I don’t mean sort of. They hurt so bad at night, sometimes I’d cry myself to sleep. But it was always called growing pains – which I still have, not every day, but a few times a week. And the first time my jaw dislocated out of socket? Yeah, no that was fun (just kidding, I rolled my eyes back so far I’m blind now, and yes I can totally type without looking).

Anyways, all these little things I remember make so much damn sense now that I know I’m rare, now that I know I have Ehlers-Danlos. Imagine if someone with a trained eye noticed when I was a kid? The heartache, the grief, the pain, the dismissal, the marginalization, the confusion, the gaslighting, the doubt – all of that could have been avoided. That’s why Rare Disease Day 2k16 is important to me.

Remember me when I die. I am rare. But I, no we, will not be silent. We will be heard. You love someone who is rare, please never forget.