A Pained Life: We’re Not ‘Normal’ So Don't Expect Us To Be
/By Carol Levy, PNN Columnist
I recently contacted a local social service agency for help. They sent a social worker and wonderful lady, Margaret, to come to my home.
The first thing she did was a “depression inventory,” a questionnaire required by the service. The questions were pro forma, and if I was a “normal person” were probably an appropriate way to see if I was suffering from depression. For someone in chronic pain, not so much.
Margaret asked me, “Are you basically satisfied with your life?”
The choices were “Yes” or “No.” The questionnaire allowed for no other answer.
No, I am not satisfied with my life. I am mostly housebound, due to trigeminal neuralgia pain and the fear of triggering more pain if I go out. My reasons for being dissatisfied with my life are legitimate. It is not a sign of depression, but of my reality.
“Have you dropped many of your activities and interests?” Margaret asked. Yes, if you mean since the pain started 40 years ago. If you mean more recently, then the answer is no.
“Do you often get bored?” Of course, I do. I am home most of the time. My eye pain interferes with reading, writing or even watching a movie if there is a lot of movement on the screen. I spend a lot of time with the TV on, as background noise, and sitting in a chair or bed waiting for the hour hand to move so the day is closer to its end.
That sounds like depression. But for me, it's not. It's merely my life.
“Were my spirits good?” Easy answer. See the above.
My neurosurgeon told me there are no more treatments or surgical possibilities for me. They all have unknown risks and it’s not certain they would help. So, when I was asked, “Do you feel helpless?” and “Do you feel hopeless?'” my answer was yes to both questions. Because my situation is hopeless and helpless. The medical profession has told me so.
Margaret’s next question; “Do you prefer to stay at home rather than go out and do new things?” could have been two questions for me: "Do you prefer to stay at home?' No, I don't. "Would you prefer to be able to go out and do new things?" Yes, I would, but the pain won't let me..
“Do you think most people are better off than you?” was the last question. And the hardest for me to answer. In one sense, yes, because most people don't have chronic pain and they're not housebound. But I am in good shape physically, absent the eye and face pain, and my brain and mind work well. I am independent. So no, they are not better off than me.
It all depends on the slant of the questions and the slant of the answers.
Most of Margaret’s questions are not intended for people in pain. I don't expect them to make ones specific for the pain community and I'm not sure, given the spectrum of chronic pain and disability, if that is even feasible.
We need to be seen for what we are. We are not “normal,” so please stop expecting that of us.
Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.
