Women in Pain Conference

By: Loolwa Khazzoom, Founder, Dancing with Pain

June 26th, 2008 • Living with Chronic PainPrint Print

A few weeks ago, I attended the first-ever Women in Pain conference, organized by the phenomenal Cynthia Toussaint and a host of organizations. For me, the highlight was the lunch break, during which I met three fabulous women in chronic pain — all of whom could totally understand me in five seconds flat, because we live the same reality.

Most significantly, we discussed how people expect that if we are disabled, we will look a certain way (have a brace, be in a wheelchair) or act a certain way (be completely downtrodden). If we don’t look or act the way they expect — if we are perky, cute, and otherwise full of life — people will assume that we are some kind of con artists or bitches if we say we can’t do something and, as a result, ask for help or set a boundary.

We also shared how we all had been through the ringer of the healthcare system — on the one hand being denied access to health care, because we were considered disabled and therefore beyond treatment, and on the other hand, being denied access to disability benefits, because we weren’t considered disabled.

On the healthcare tip, some of the women shared how they were treated as pill-popping druggies in search of the next hit, and how as a result, they were denied very necessary pain medication. We also talked about how broke we all were because of exorbitant health care bills.

Lastly, we discussed how weird it is to be young and unable to do things that old people can do. I mean, how strange does it feel to tell a grandmother that she has to pick up something heavy, because she is more capable of doing it than we are? One woman revealed how she ended up shattering an entire box of china, because when her elderly family members asked her to bring it over to the table, it seemed so ridiculous to say no.

I felt empowered not only to know that there are other people like me out there, sharing the same struggles every day, but also to have the chance to meet some of those people face-to-face, and to create new friendships with them. One of the most devastating effects of chronic pain is isolation — feeling alone, butting up against a cold, uncaring system, sifting through feelings of frustration and despair. This conference was a great healing balm for the emotional component of chronic pain.

The second highlight of the conference was the performance of two actors — one playing a patient, the other playing a doctor. They role-played two scenarios: The first represented the most common experience that chronic pain patients have when going to a doctor for help — i.e., where the doctor is over-the-top obtuse, obnoxious, and offensive.

The second represented what a patient-doctor interaction could and should be. I got all teary-eyed watching that scenario. My life would have had such a radically different path if I had been treated that way — with respect, true care, a listening ear, an intelligent and investigative attitude, and a partnership. Instead, my experience had many elements of the first scenario, and then some: I was treated with suspicion, contempt, annoyance, resistance, neglect, judgment, blame, and paternalism.

Sigh.

Another highlight of the conference was the art class I took, where we were asked to make two masks: one that reflected our outer face, and one that reflected our inner face, or the face of pain. For me, both faces were one: a sparkly, jubilant, colorful mask full of beads, shells, feathers, and other ornaments. When asked to make a statement representing my mask, I replied, “Embracing and celebrating what is possible.”

Looking at my mask, and thinking about what it would have looked like years ago, I realized that Virginia slims was spot on: I have come a long way, baby!



Comments

Paula Kamen June 27th, 2008

Thanks for the posting! I was sorry to miss the conference but now feel like I was there, thanks to the vivid and personal description. Especially intriguing was the doctor/patient scenario acted out, which I hope goes on the road for more performances to healthcare givers.

Jennifer Hughes June 27th, 2008

Loolwa you are so wonderfully amazing and so right-on! with this fabulous insight and reflection not only in regards to the conference but how all of our lives effected in so many different ways. I am soooo fortunate to have met you that day too and start a new friendship. Take care and all my love to you and all of us Fabulous Women In Pain all over the world – You are always in my thoughts and prayers.

Greg June 29th, 2008

I was just reading the book “The Lonely Patient” by Michael Stein. In the book he says that one of the problems with disease vs. pain is that disease can be seen and pain has to be believed. It’s amazing in this day and age that the medical community’s first thought is that people are drug seeking.

Pain is so misunderstood and to the medical community and researchers one of life’s great mysteries. It’s crucial that those facing chronic pain, especially women stand firm on their demands for relief strategies and new treatments. I make the gender difference because many medical professionals I speak with refer to men’s stoic nature and therefore when they present with pain they are more readily “believed”. I’m not saying it’s fair, I’m saying it’s the way it is.

We have to co-create new relationships and understandings with our medical teams. Longer appointments so that the doctors could get to know us would be a start. Having a relationship with the medical provider helps us be believed.

Thanks for sharing your experience and kudos to the organizers of the Women in Pain conference.

Marsha June 30th, 2008

Thanks so much for this blog!!! This sums up my experience so well!

I really appreciate your writing about this.

And thanks for the links!!!!

YOU rock!

Shelia July 1st, 2008

I wish i could have went to the conference, but live so far away!! Thanks for the posting, it always makes me feel part of a great group of women to read the blogs and explore the For Grace website. I need to find a local support group but i am hesitant to go in case i actually know someone. I am still very fortunate that i have a good job and can still pull that off and raise 2 kids, with the help of a wonderful husband, but sometimes i need some mental support from someone who understands pain. Like everyone else on here knows, since i dont look like anything is wrong with me, people seems to forget that i cant do everything they ask!! Keep up the good blogs!! And God Bless all the women in pain around the world. Through him we will win this battle!!

sharon shani July 5th, 2008

dear Loolwa’
when I saw your name Loolwa so its just got to be you. there’s only one Loolwa!
some years ago you came to my clinic at country dekel and you received a massage from me. I remember you being very special but since it was so long ago, cannot quite remember what took place, but know it was special?!
so today of all days I am in agony with back ache and totally out of action, so having to slow down and rethink….
so hoping your pain subsides, as now I know it, its extemely hard to function.
take good care and lots of love (if you remember me?) Sharon

Tina Sinclair July 7th, 2008

just a quick note to let others know that the box of china or the things that you cannot pick up or move with ease doesn’t mean we are no longer strong women.

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