Isolation and what to tell other people

March 22, 2010

I've had chronic pain for 18 years caused by major jaw surgery. For years no one

could figure out why I had a sharp, stabbing pain just below my left ear.

Doctors kept saying, " there's nothing there. "

I've worked with a wonderful pain specialist for the past 10 years; 3 years ago

we identified likely cause of pain. 2 years ago I began working with a dentist

to fix the problem, but last year my team realized it's not as simple as we

thought. I still have daily stabbing pain, muscle spasms, etc. My wonderful

team has not given up and I continue to learn to manage the pain.

Here's my question for the group. I've worked part-time taking off months for

medical leave when needed. In December I applied for disability retirement; I

should hear from OPM by June and probably will get it.

The transition has been hard. Validates WHY I have not been able to do all the

things I've wanted to do, professionally, community, socially, with my family.

But also makes me face up to fact that I have a serious debilitating problem

that is not going away.

What do I tell people? I don't look sick. I've had people tell me I look so

healthy it's hard to believe me. Do I tell people I'm " on leave " from my job for

awhile because my family needs me? I have a 13 yr old & 16 yr old (he has

Asperger's).

But then how do I explain why I still can't get involved in all the committees

and other volunteer activities? I can do more than when I was working, but the

point of stopping was to give me more time to take care of myself, not replace

my job with other " work. "

Do I say I have a " chronic pain problem " and leave it at that? I still feel

isolated from most of my neighbors who either work or stay home with kids. I

want to connect with people but how do I do that without mentioning my

condition? In the past when I've told people they seem okay at first, but then

don't understand why I'm not better six months later.

My family is supportive and I have a great medical team. But even my kids wonder

why I'm not like other moms. I don't feel like I'm a good role model for my 13

yr old daughter. She asked if I'm still a lawyer if I'm not working. Finding

this group on-line has been wonderful. Any advice would be appreciated.

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