To the Hand Specialist Who Acted Like He Was the Judge and Jury
I’m still processing our first important appointment we had a couple of months ago, and I thought it might be helpful if I articulated my feelings during and after our meeting to let you know why I won’t be coming back.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
I arrived in your office a sunny day in late winter. I was dressed as I usually am for most of the year, wearing thick socks, sturdy shoes, layers of thermals, a long sleeved t-shirt, a warm cardigan and two scarves. I loved your corner office with the winter sun pouring in, and unlike many medical offices where I am often too cold, I appreciated the fact that I could remove both my scarves and my cardigan. I was a little self-conscious that I looked like the Michelin man compared to you in your light layer of clothing. But I am used to that now.
Thank you for your warm welcome and gentle way you asked how you could help me. When I explained my condition to you, you told me you have never heard of Ehlers-Danlos syndrome (EDS) in a sincere and honest way.
Thank you also for listening to me as I explained my aching hands are especially bad in winter. I came to ask about splints for my hyperextended fingers and compression gloves that can be fitted onto my hands. I explained compression gloves keep my hands warm, the chilblains away and give my tissues the extra support they need in winter to stop my blood vessels from bursting.
So thank you for listening to me. I felt heard.
But then you answered me, and I didn’t expect what came next. I felt as though you had listened to my story, but then like a judge and jury, you made your ruling about everything about me — all of my body, everything that I do and everything that I am doing wrong. This is the impact your ruling had on me:
• When you told me the only reason I get chilblains is because I’m not dressing properly or warmly enough, I felt scolded and invisible before your eyes. This Michelin man is not only already doing all the things you are instructing, but is also wearing the exact brand of clothing you mentioned. How do you not see this?
• When you instructed me never use the internet to look up information about my condition, I felt a kick in the gut. You didn’t even give me a moment to tell you that the only reason I got my diagnosis after 30 years is because I did my own research by using Google and figured out which kind of specialist to see who would know about EDS.
• When you handed me a brochure of products that I might like to buy and told me you can look at my fingers and splints the next time I came in, I felt robbed because you didn’t address the very thing that brought me to you, and yet I must still pay you for the privilege.
I came here to ask for help with my hands. I didn’t ask you to start from scratch and “fix me.” I didn’t ask you to compete with all the other specialist I already have.
Even though I will never come back, I want you to know that if you treat every patient like you did with me, people will leave unhappy. You need to know that we trust you as your patients. We need you to help us with our individual and unique issues, and if I didn’t have the background, the gumption, the trust in myself and my other specialists, then I could well have taken your advice to my detriment.
I believe and agree that there is a ton of information out there that isn’t accurate. But that can also happen with specialists who are misinformed either through inexperience or who see things only through limited filters.
I’m not saying that you are any of these things, but I would love it if you could see that there is a whole world of information out there and it isn’t only confined to what you learned in school. Your patients are people with individual needs, diseases and inherited conditions, and as a hand specialist, you have the opportunity to be part of a whole bunch of teams that can change people’s lives.
This letter is not about what you did wrong. It’s about the impact on me, and more importantly, the opportunities that you could and can have to help so many people.
Jennifer has Ehlers-Danlos syndrome (EDS). Jennifer was born in South Africa in the late sixties, into the worlds of apartheid, feminism, and strict religion, to parents struggling to find their own place in the world and to make a difference. Lost in their battle to be different, better, "cleverer" than those before them or around them, and her mother’s fight to break moulds, little Jenny fell between the cracks. Born a girl instead of a boy, bubbly instead of serious, fun and talented instead of academic, everything about her was “wrong". Neglect doesn’t always look like dirty or starved or diseased or beaten. Neglect is chronic and often invisible. In a small bubble entirely cut off from the rest of the world, scrawny little Jenny's voice, squashed by her parent’s need to find their own, is swiftly silenced, again and again. However, her shine refused to die and survived within her as a spark, a fighting spirit, and a sense of hope that defies logic. It took her five decades, six countries, multiple diagnoses, and ultimately a physical and emotional collapse for little Jenny to successfully find her voice, to thrive, to get the medical and psychological care she needed, and to begin the journey to a place of sanity and peace. Her story is one of crushing loneliness and isolation, but more than that, it's ultimately a story of resilience, hope, and redemption in ways that she could never have imagined. Jennifer, diagnosed at 48 with EDS, is a mentor, counsellor, artist, and now a successful author, writes for various blogs, and other public spaces on neglect, emotional abuse, anxiety, disability and chronic illness. You can find her on most social media platforms under @JPeaSmith. Jennifer is the author of "The Lion and the Peacock” and the first in her epic story “My Africa My Home - The Fault in the Family Memoir Book One”. From Jennifer: Jennifer is my name, Peacock-Smith is my pen name as well as a very special family name (you'll have to read the book to find out where it comes from but that's not out as yet, it's coming though!) If you’d like to receive the first chapter of My Africa My Home – The Fault in the Family Memoirs Book 1 (for free, in your mailbox), then sign on for my “big news only” (I promise I won’t spam you! I only send them when something important is happening) then clicker here on the Newsletter link: http://eepurl.com/cvljU9
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