I have met so many people over the past 16 months and no matter what their expertise is or their knowledge or the possible impact of these for me, the most important thing is their kindness.
From my beautiful GP, Dr G, when she provided the initial diagnosis, to regular blood tests, ringing up to make appointments, popping in to pick up a script, sitting in a hospital ward for treatment, having an MRI, having a chiropractic adjustment, to going to a therapy session. The most important thing is the kindness shown to me. I will never forget these moments of connection when someone has taken the time to just be kind.
This whole thing is scary and while I look so brave I am often shit scared and the kindness counts.
From my first meeting with my Cardiologist, Dr S, where he listened to my story, did some initial examinations and lined up more tests. As we were leaving he hugged me and said “leave the heart worries with me- the MS is enough for you to worry about”.
To Dan who realises that my silence in the car driving to another MRI appointment means that I’m really just not looking forward to the lonely 90 mins ahead of me in the tube and that taking me out for coffee afterwards will restore some sense of normality.
To my Psychologist who gives me the space to talk through whatever it is that I need to process in the session- just sharing her wisdom, some balance and kindness as needed.
To my Chiropractor and his awesome receptionist who show genuine care for how I am going and who keep an eye on my progress with return to work and in turn share a little bit of their lives with me.
To my OT who gives me amazing arm massages while checking in with me about the ongoing saga of my right hand, associated strength difficulties and the flow on impact on my posture and general strength.
To my Exercise Physiologist who is helping with the flow on effect of my hand difficulties on my posture. She helps to develop new strengthening and stretching activities each session- remembers my stories from previous sessions and asks for updates. The kindness, the care and our laughter make these sessions super cool.
I have read lots of books about the connection between medical specialists and patients and there is such a strong link between having a positive relationship and better outcomes.
I am a huge believer in my own professional practice in learning from people who are actually experiencing the difficulty. My Neurologists could learn so much from me (and their other patients) if they just asked and listened. I am often told- “that isn’t MS” or “that isn’t from Tysabri”. Yet my Instagram friends report similar symptoms and experiences. So while maybe not evidence based or from a journal- it is instead from real life, from people battling this crap day in, day out. We are the experts really.
Since meeting my GP, Dr C- whose office is walking distance from our new home, we have developed a great working relationship. In one of our first appointments she told me that I am the expert in managing this MS and that she will always listen to what I say is going on and will help me to work it out- and she has. She reassures me with the weird health niggles and listens when I bring new information about the Overcoming MS program, she comments when I’m looking well and gives care and kindness when I turn up looking like I have been through the wringer.
Kindness counts and can really be the main thing another person needs from you today.
Thanks for reading,