Two PR management tools around Chronic Conditions.

img_2713Yes, that is a thing; having to manage public relations. I guess that we all do it to some extent; many of us present ourselves on Facebook only on our best days and so on. But for those of us with chromic conditions, not only is everything else in life more complicated, but so is our “public image”.

There is an article doing the rounds at the moment by a lady called Denise Reich, who has managed to capture and articulate what is being experienced by millions of people all around the world, every day. I have no doubt that she is now a massive role model and hero, and she deserves everything she gets for that. Thank you thank you Denise! There is no point in me trying to capture what she says so well, and I have nothing to add, but like so many others I am sure, it made me think about the things that I do in my own life to manage these things. I have not been purposeful as such, but when I read her article and looked back at what I have already pretty much done in my life, there are things that I do to manage how people perceive me and I how I cope with them.

Here are my two major PR coping mechanisms:

  • One: I have reduced who I have to explain everything to dramatically. For the most part I didn’t actually have to do anything. For the majority of the friends that I have lost in the year since diagnosis, almost all of them disappeared all by themselves. So I guess it was less about me cropping my social life than it was about me no longer chasing after people who clearly no longer want to be as close.

My life has become so limited, that I actually don’t have the physical or emotional energy to deal with people who have made it perfectly clear, (either told me outright or implied it), that they don’t want to have to think about me, be careful of me, thoughtful about me, or helpful for me. They want to be able to say and do whatever they like and if it affects me in any way then I am being selfish and I am the one in the wrong… So I deal with that by letting them go.

  • Two: Consistency is everything. One of the hardest things about Mah Eeds is the unpredictable nature of how each and every day is going to go. But where ever possible I try and be consistent so that I don’t have to explain confusing things to people all the time. It is sad that it means that I have to miss out on things that I could possibly otherwise manage, however the effort and pain of the interrogations afterwards is simply not worth it for me.

One example is that I can’t go far without a crutch or even further without a wheelchair. Neither of these are a choice for me, however if I am only going to be walking from the car to someone’s living room and back, then that distance can theoretically be covered without either. However, apart from the dangers in covering everything from steps to different surfaces, going around corners and negotiating moving objects like people and pets, I have made a rule to never go out in public without the protection of my crutch or wheelchair. For no other reason than on the few occasions where I have decided to “brave it” without them, all everyone wants to know is how I suddenly got better or healed, and the conversation no longer stays safe, “normal” and real, …but instead it concentrates inaccurately about me.

Managing the expectations of others is an endless, thankless task and no doubt this post will be the first of many



4 thoughts on “Two PR management tools around Chronic Conditions.

  1. I hate that my coping mechanism has been to show myself struggling to stand up from my chair even though the chair makes it so it’s often easier to stand up for that short period of time. I’m trying to plan some patches to go on the chair so I don’t feel I have to show what’s going on in my body.


      1. I’m thinking of things like the service dog patches that say the disability so something I can sew onto the back that says EDS and something about saving spoons


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