Managing Expectations

I want to make this as brief as I can in order to “train” myself to write shorter posts. For those of us who deal with chronic illness, it is absolutely CRUCIAL that we learn to “manage our expectations.” Basically, this means giving up being a blind optimist and giving up being a pessimist based on what is likely a dark and literally sick past in order to become more of a “realist.” Now, when I say that, I want you (and me!) to look at the “whole picture;” if we “manage our expectations” by removing the hope of optimism and the cynicism of pessimism, we are stuck in yet ANOTHER “limbo” that paints our lives as being framed by chronic illness. However, if we look at the whole picture, we can see not only that we MIGHT go into remission (there would be no word “remission” if it weren’t possible for many of us) or our diseases might become more manageable or we become more flexible in order to work with the challenges we face. Medical research in the areas of autoimmune (and autoinflammatory) treatments is advancing faster than I can keep up even within the “Behcet’s” treatment area. There is always that hope and the ones that go with that hope – to me, that is changing blind optimism into a very hopeful (with evidence to back it up!) realist.

With all of THAT said, I still think it is important to take note of what your limitations are in the here and now. I also think it is important to remember (and write down!) what your limitations were in the past – for me, personally, although I am by no means making “leaps and bounds” as far as disease “remission” goes (it has been a very LONG and slow process, and I am nowhere near out of the woods!), there is SO MUCH MORE that I can do now than I could do even a year or 6 months ago. Those “little things” are HUGE. When I remember that I was just getting used to my back brace a year ago and I literally could not bend or lift ANYTHING; that I had to be pushed in a wheelchair more often than not … and now I am doing my PT exercises and tapering out of the brace and walking 7+ miles a day … that is remarkable. You might have more drastic changes (for better or for worse), but making notes of what your limitations were and what they are now and comparing the two does help your brain “come to terms” with whatever it is you are dealing with. There have been many times in my life in which the “current limitations” list FAR outweighed the “past limitations” list … but looking back over a LONG period of time in a realistic manner has enabled me to find peace in knowing the disease / syndrome is there and that I am doing the best I can do to treat it and therefore giving myself the best shot at “getting better.” That is what “managing expectations” means to me. It is FAR from giving up hope or thinking that everything is bleak if you are in that position – rather, it is simply a means of coming to ACCEPT what just IS and in accepting what is, finding ways you can work with it and do more of the things you want and need to do in your life. There is no reason you should give up on your hopes and dreams – and when things are the worst, your basic needs – remind yourself of what you REALLY want in life and even if you have to make something like a “vision board” to remind you of all of it or even just to put a smile on your face, do it so that you are both accepting your current reality but NOT ALLOWING THAT CURRENT REALITY TO DEFINE THE REST OF YOUR LIFE.

I would really love to hear some comments about these thoughts, especially from my fellow “spoonies.” I really hope you are all having a happy and healthy day wherever you are in the world – and wherever you are in the world, I hope to visit soon soon soon!

❤ Always, Beth

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