I have suffered from Burning Mouth Syndrome (BMS) since 2008. Yes, I am in my 12th year of chronic pain and there is no end in sight.
If you have read any of this blog, you have an idea of the incredible amount of testing, medicines, and specialists I have run through and you know that I left no stone unturned in searching for a cause, a treatment, a cure, or what I settled for eventually…a diagnosis.
You may be a sufferer, whether Primary BMS (no underlying illness), Secondary BMS (burning due to other illness or treatments), a myriad of other chronic neuropathy illnesses, or you may care for someone who is suffering.
Have you noticed that they often do not talk about it? When you ask how they are, the answer you often get is, “Fine.” This is not untypical. There is something about the sheer persistence of a chronic pain syndrome that makes many of us go underground.
Let’s talk about that.
When we go underground with our pain, we do some potentially destructive things.
- We deny our knowledge to the community around us. Whether it is facts about our illness, coping strategies that may help someone else, or helping to define the aspects of our illness that may intrigue researchers, attract funding, and perhaps lead to diagnostic tools, treatment, or a cure; it is all valuable.
- We withdraw from the people who care for us, and without proactive communication, we can irreparably damage relationships that could be of vital support.
- We discount our importance in the world. Never thought about it that way? You aren’t alone. We feel that we are putting a burden on others when we talk about our pain or we think we are whining when we acknowledge to others that.”No, it hasn’t gone away. I have just gotten better at pasting a smile on my face.” How would you feel if someone you loved hid that very important knowledge or those feelings from you?
Something to chew on, don’t you think?