I have been writing about Burning Mouth Syndrome (BMS) for years now, and recently a reader reached out to me and said she had been dealing with this chronic pain for over fifteen years. She had read one of my blog posts and has been keeping a pain diary for the first time ever.
“Hallelujah, sister!” I wrote.
“I hope that you find a pattern or a clue to better coping strategies and that you share your data with your doctors so they can help you find alternative therapies or medicines. Your pain diary may reveal that some work a bit better for you than others.”
She responded that she was happy to have “something concrete to do about BMS,” but was dealing with an unexpected side effect. She was accused of being selfish by her children and is not being supported by her husband in this effort.
Her family was perceiving the time she spent journaling her pain as “selfish,” and time that they deserved her attention.
Has this ever happened to you?
Do you hide your pain or depression because you don’t want to compromise the attention, time and effort you give to your family and friends? Do you downplay its effect on your life and disguise your higher pain days with a bigger smile?
I think this is more common than we would like to think, and many of us may accept it as part of life with chronic pain.
What could we do instead?
Every family is different, and the patterns you have set over the years are extremely difficult to break, particularly when chronic pain often lives up to its name. It is chronic, unremitting, constant, and many times there is no cure in sight. It is hard to understand, and even harder to relate to for people who have never experienced it.
Perhaps you need to realize that the very nature of chronic pain is why it is so important to share and discuss it with the people you love and who love you. Express how you feel, and reassure them that although you will not let it keep you from doing most things you are accustomed to doing, it will occasionally take precedence. As the loving family you know they are, you know that they will support you in what you need to do to cope. (Yes, you are welcome to use these exact words. I won’t mind at all.)
You see, those of us in chronic pain may be even more likely to commit the cardinal sin of failing to set expectations. We do not tell people what we need from them, and then we are hurt or angry when they do not give it. That isn’t fair, so let’s change it.
Have a family meeting as soon as you get your thoughts sorted out. Tell them where you are emotionally and physically. Reassure them of your love for them and your commitment to the family. And then set out your expectations.
What might they be?
Again, every family is different and what works in my situation may not work in yours, but devote some thought to it and come up with at least two or three things they can all do that will help you.
Example: You Say – I need to track my pain in this diary to help me find better ways to cope with it, and possibly ways to relieve it. I need your support to help me do that. If you see me getting very quiet and withdrawn, it usually means the pain is worse. Gently remind me to write it down and ask me if I need a cold drink or anything you know helps me.
Example: You Say – Lack of sleep makes my pain worse, so I need your support when I go to bed early or take a nap. It won’t happen all the time, but when it does, I need for you not to make me feel guilty for taking care of myself.
I know you know where I am going here because it is where I often go when writing about very difficult situations…communication is the key. You can’t expect them to live up to your expectations without telling them what they are.
So, ready to speak up?