Dear Hand Specialist,
I am still processing our first important appointment that we had a couple of months ago and I thought that it might be helpful for both of us if I am able to break down and articulate my feelings during and after leaving your office and to let you know honestly why I won’t be coming back.
I arrived in your office in late winter, on a sunny but cold day. I was dressed as I usually am for most of the year, in long john thermals, thick socks, sturdy shoes, layers of thermals including vest, spencer, long sleeved T-shirt, a warm woollen cardigan and two scarves. I loved your corner office with the winter sun pouring in and I enjoyed that unlike many medical offices where I am often too cold, I appreciated that I could remove both my scarves and my cardigan.
I placed both across my lap as I entered your office and 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 for the gentle way that you asked how you can help me. I truly appreciated that when I explained my condition to you that you responded with what came across as sincerity and honesty that you have never heard of EDS. Thank you also for listening to me as I explained that in winter my aching hands are especially bad and that I have come here today to ask about splints for my hyperextended fingers and compression gloves that can be fitted to my hands. I explained that compression gloves keep my hands warm, the chilblains away and give my tissues the extra support that they need in winter to stop my blood vessels from bursting. I usually use over the counter gloves and they work wonders but don’t fit perfectly.
I explained that I am doing better than expected since diagnosis a year ago, with my small team of wonderful supportive specialists who are managing my energy, my blood levels, my injuries and my hormones. That years of painstaking trial and error, with a large dash of heart ache and agony but a few wins along the way, have resulted in a very precise regime of therapy, rest, and what appears at last to be a winning combination. I explained that I can still drive, go out a little, but that every third day I need to stay in bed, which is fine because then I get to do all my writing.
Thank you for listening to me so well, I felt heard.
But then you answered me and I was not expecting what came next. I felt as though you had listened to my story but then like a judge, jury and executioner, you were now making your ruling on everything about me, all of my body, everything that I do, and everything that I am doing wrong. This is the impact that your ruling had on me:
- When you told me categorically that the first thing that needs to happen is to get me out of bed I felt dismissed and defensive of the specialists who have put me there, with such hard work and such great results. I felt as though you did not hear me that this is a crucial part of my stability.
- When you told me that the only reason that I get chilblains is that I am not dressing properly or warmly enough I felt scolded and invisible before your eyes; the Michelin man not only already doing all the things that you are instructing and assuring will fix me, but wearing the exact brand you mention. How do you not see this, ..or me? I want to point out my layers and open my phone and show you the article on Wikipedia with the last couple of lines which mention that regular chilblains may be a sign of a connective tissue disorder, and that EDS is exactly that.
- When you instruct me not to ever use the internet to look up my condition and you tell me that Bloggers are liars because if they use a wheelchair 10% of the time, that they only blog about wheelchairs, I feel kicked in the gut. When you go on to tell me that all bloggers exaggerate and that as a result I will then get a skewed idea of what my future health will be, I feel an impact again. You don’t stop for breath for me to tell you that the only reason that I got my diagnosis after 30 years is because I have been doing my own Google research, worked out which kind of Specialist to see who would know about EDS and that I myself actually use a wheelchair 10% of the time, ….and that I blog full time and not only about wheelchairs.
- When you hand me a brochure of products that I might like to buy and tell me that when I come back next time we can look at my fingers and splints (the main thing that I came here urgently for), I felt robbed because you have not addressed what I brought to you and yet I must still pay you for the privilege.
I came here to ask for help with my hands, I was not asking you to start from scratch and “fix me”. I was not asking you to compete with all the other specialist that I have. I am a well functioning proactive human being and even if I didn’t study Biochemistry at University, I would still know way more about my body and the thirty years that I have suffered than you do.
I need to tell you these things even though I will never come back and see you because I want you to know that if you treat every patient as a bunch of text book symptoms, each with only a single solution, then not only will some people leave unhappy as I did, but some, like me, may not be fixed, or worse. I need you to know that as patients we trust you. We need you to help us in our individual and unique issues, and if I didn’t have the background, the gumption, the trust in myself and my 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 is not accurate, but also that it comes not only from the internet but also from specialists who misinform either through inexperience, lack of sufficient training, or who see things only through limited filters. I am not saying that you are any of these, but I would love it if you could see that there is a whole world of information out there and that in terms of hands alone, it isn’t only confined to what you alone have learnt in school. Your patients are people, with individual needs, diseases, inherited conditions, and as a hand specialist, a foot specialist, a heart specialist or a surgeon, you each have the opportunity to be part of a whole bunch of teams who can change people’s lives.
This letter is not about what you did wrong, it is about the impact on me, and more importantly, the opportunities that you could and can have for so many people.