“walk a mile in my shoes”
An adaptation of a line from a poem by Mary T Lathrap 1895 who in
turn may have gained inspiration from Native American Culture.
Whilst it’s true I have always felt the cold. Things took a turn for the worse when my arm started to go numb. Thinking it was a trapped nerve. I embarked on some physio until the therapist said I needed investigating further.
Diagnosis
Several visits to the doctor & a number of tests later it turns out I have a rare autoimmune condition. Part of this means that I am now very sensitive to small changes in temperature.
This has resulted in me having to become an expert ‘clothes juggler’ to maintain my core temperature. In practice this means wearing warm clothes at odd times & strange places.
For example when others may be in t -shirts I’m now likely to be sporting a thermal vest , gloves & a bobble hat.
Standing Out in a Crowd
All of which attracts unwanted attention either by the ‘judgy’ or the ‘in your face’ questioners. My response is often dictated by the circumstance & the number of questions I might have already been asked.
If you’re the first to enquire. I might be inclined to politely inform you that I have a medical condition & offer up a brief explanation.
If you’re the umpteenth & in danger of ruining my day I can’t guarantee any level of polite response.
This is where those of us with ‘hidden disabilities’ have to now navigate a difficult path between trying to educate & not let complete strangers ruin our day.
Currently I am trying out different approaches & so far the best is to meet the situation head on. I was recently at a yoga retreat & had already felt the surreptitious glances & unspoken questions building.
During the introductions I preempted things. Sometimes by announcing ‘my name is Denise & I have an autoimmune condition & I’m wearing extra warm clothes because’. Maybe because British folk don’t tend to be so upfront the others seemed a little shocked.
However it paid off as during the day people only asked thoughtful questions & demonstrated kindness & empathy. It made for a very enjoyable day & took the pressure off me. Sadly it’s not always so.
Managing Others Entitlement
I guess my message to those who still feel entitled to comment vocally to others. Whether it is to comment on any aspect of their appearance – is simply don’t!
Consider for a moment how invasive you might find it if you found yourself to be on the receiving end of such comments. Would you feel okay if a stranger walked up to you & started asking you to divulge medical information or justify what you are wearing to them?
If the answer is no then you might start to understand the problem & become part of the solution instead.
Roaming In A Robe
Currently there seems to be a group of people who belong to a social media group who take delight in belittling people who choose to wear a ‘robe’ style coat.
I believe some of even taken photographs of unsuspecting wearers. This as I understand it is to be able to post the photos online. Together with a mocking comment because they don’t wear the robes for the original purpose eg changing after surfing or wild water swimming.
These people find it humorous to poke fun at those who wear the garments for comfort & warmth. For me wearing my dry robe has been a game changer. Enabling me to continue to join in activities that otherwise I would have had to give up.
Well with the condition I have now my days of surfing or swimming are likely done. Yet my robe is often the only means I have to maintain my core temperature outdoors.
Managing The Condition
My choice is simple stay trapped indoors or wear the robe out. Faced with the same predicament I wonder whether they would find the scenario quite so funny.
So yes as my new top says in bold type ‘Yes I am cold 24/7 !’ In the hopes that if our paths cross you talk to me about something that might be more interesting & infinitely less invasive.
Use this link to find out more about the conditions called Scleroderma & Raynauds