Recently I was asked to write a piece about what I am thankful for this Thanksgiving. My first reaction was, “Oh God, Thanksgiving is actually here again?”
I don’t have a large family. Thanksgiving usually consists of my mom and me, having a nice feast – the usual: turkey, stuffing, real cranberries, etc – and then we watch a movie. She leaves before dark, to drive home. That’s it. This is not an ideal Thanksgiving, around a big table with loved ones. I try not to focus on it.
Don’t get me wrong, I am thankful for the usual things – my mom, a house, a few great friends, my job, 2 beagles, a warm bed, clothes, etc. I have seen the Thankfulness in November posts, where you name one thing that you are thankful for each day in November. I have posted such things in November too. I am a positive person. I’ve even been called a Pollyanna. Thanks a lot! I’ve got that down, to my detriment it seems.
This year, what I’m most thankful for, is something that’s free. Something rooted deep in my bones, from personal experience. This quality took hold, stemmed and bloomed, due to rare disease. I’ve been called sensitive, as if sensitivity itself was a disease. I’ve always been sympathetic. But I never fully “got it” until I was unable to cure my own diseases.
I am a patient advocate for Klippel-Feil syndrome (KFS), and other rare conditions I face, such as Ehlers-Danlos syndrome and Dystonia. I am thankful for the tough, heartbreaking, and humbling experiences that have given me a new depth of compassion: Empathy.
When someone in the rare disease community shares what’s been a struggle for them, I can relate first hand. I don’t say “Oh I am going through that too, I am hurting”, or “I am going through this thing that’s worse.”, which are some responses I have heard. Those seem selfish to me. When someone shares what they are going through, and exposes that rawness, I completely place my personal issues aside, and focus on them.
No, I haven’t experienced it all, nobody has. However, I try as best I can, to genuinely meet them right where they are. Then I offer something truly meaningful from within. This is not an, “I hope you feel better!” or “I’m praying for you!” that we see so often in our hurried lives. I am thankful to be able to offer something more personal, more fitting, that they may need in that place. Empathy comes from the heart.
You see, when someone shares that their physician does not know much about Klippel-Feil syndrome, they feel lost and confused. I know how hard it is to realize that KFS is rare, with only 1 in 42,000 people affected. Most doctors have never had to learn about KFS (or insert your rare condition here), much less have the time to look it up. Even when they do, the information is often outdated, lacking, and inaccurate. A patient’s actual experience with medical issues due to KFS, and subsequent symptoms, is not well documented. Therefore, a patients symptoms and needs are not validated. The experience patients and parents encounter at our specialists appointments, is so difficult to digest. So discouraging. I understand.
When a patient shares that their physical pain or illness is stopping them from functioning at home, with their kids, at their job, during travel for work or vacation. When things dry up socially. When the process of scheduling doctor’s appointments, tests, providing self care, and advocating for your needs requires time, energy and persistence when you don’t feel well, your tank is on E. I’ve been there. Let’s face it, I am there.
When someone is in chronic pain, and accused at their specialist, or at the pharmacy for being a drug seeker or abusing medication. Medication that’s been prescribed! That’s a real mind game. I’ve played that game.
When someone is struggling to pay for their basic needs. When their rent, mortgage, food, electricity, water, cell, shoes, can’t be paid for, because of excessive doctors, hospital bills, and medications. When they can’t work full time to support themselves, because of a disabling, chronic rare condition. Or a combo of both. The devastating one-two punch. I’ve been there too, and I probably will be again.
When someone is heartbroken that they are going to lose a career they enjoy, or something they love to do, due to rare disease. Their friendships have become few and far between, they’re going through a tough break up, or family is not understanding their needs. Ugh. I know it hurts. I know it’s lonely.
When someone leaves the specialist, or a hospital stay, with no solutions, no answers, scary information, and seemingly no hope. When they’ve tried numerous medications, therapies, treatments and still feel awful. As they exit through the halls of the medical center, and they feel completely drained. Or they begin to cry even before they leave the exam room. The level of desperation is high. All of their strength has been sucked out of them. That’s just the worst.
When that last scenario happens repeatedly. You’re completely exasperated. Then some form of loud sobbing -wailing-escapes you, and you can’t hold it in as you head to the car, and everyone in the halls can hear you. It sounds like someone just died, and you know a part of you has died. Well crap – that’s just the worst day! That day sucked.
I never even use the word ‘suck’, but there you have it, three times. I am crying right now, just reliving that sucky emotional experience. That’s four.
When a parent cannot get the correct diagnosis for their child, even when all signs point to (insert condition here). When they can’t find the right specialists even remotely near them. When they are worried about their child who is having a physical issue, or is in pain. When the hospital and surgeries are commonplace. When tests come back with no answers. When their child is dealing with adversity, being bullied, or any number of things – it’s trying. I know this road is filled with hard decisions and exhaustive medical ‘careers’. As a patient, I can relate. I am here and will try to help.
Life hasn’t given me an easy road with rare disease. I have had to make tough sacrifices. This has required doing things I never thought I would need to do. I’m in the trenches fighting with you. I’m in pain, exhausted, and frustrated. I’m far from perfect on this journey. I’m always learning. I haven’t solved much. I’ve been knocked down so many times.
Along with learning how to get back up, I’ve learned about empathy.
Keep speaking up for your needs, even when nobody responds or has answers. Keep sharing information about the conditions you face. Keep going, you’ll learn how to find medical care as best you can. You’ll survive the financial impacts. You’ll find new friends and new interests. I am amazed at your strength in adversity. I feel you. I care. Keep asking, and use the support that’s available. Keep pushing . You can do this, even if it’s for the 46th time. Remember to celebrate the victories. Wash, rinse, repeat. We’re all just trying to figure things out.
This Thanksgiving, I am thankful for empathy. A rare gift.
Brene Brown on Empathy:
Definition of Empathy: The action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner. –Merriam Webster
About the Author: Sharon Rose Nissley has several rare conditions including Klippel-Feil syndrome, Ehlers-Danlos Syndrome, Cervical Dystonia and Vasculitis. She is a patient advocate for rare disease and founded Klippel-Feil Syndrome Freedom to help those who have this rare, congenital musculoskeletal condition and their families. “I just want to help those affected by rare disease, and empower our community to dig in, learn,and ask for what we need.”Follow her on Twitter: @Rose _of_Sharon8, @KFS_Freedom and Instagram: @Rosiegal8, @kfs_freedom
