David Baxter PhD
Late Founder
Seeking Hope From a Support Group
By LOREN BERLIN, New York Times
June 15, 2010
My fianc? drove me 30 miles to the nearest support group meeting, and I was eager to attend.
At the age of 29, I had recently received a diagnosis of ulcerative colitis, a chronic disease of the colon characterized by intermittent cycles of potentially debilitating illness and completely normal living. Although my family and friends had been great, they couldn?t fully relate to my health problem.
None of them had experienced internal bleeding and diarrhea so severe that they had lost five pounds in a week and were on the verge of hospitalization. None of them were absorbing the reality that the only cure for a disease they?d never heard of was the surgical removal of the entire large intestine. They couldn?t counsel me on which foods to eat, what side effects to expect from my medicine or how to rediscover my sensuality after months of enemas and colonoscopies.
But I felt certain that the support group members could.
I entered a small waiting room tucked into the back of the hospital and took a seat in the ring of chairs. There were maybe a dozen of us, and we went around the room introducing ourselves. There was a gaunt, hobbled man in his late 20s who had recently filed for disability status because he was too sick to work. There was a high school girl who sat silently, her eyes glued to the floor, her jeans hanging from her hips like gunnysacks, while her mother explained the many and varied treatments that had failed to induce remission in her daughter. There was a woman seated beside me whose intestine had perforated during a layover in an airport while on a business trip.
We talked. The man on disability said he wanted to exercise more but worried that he needed to be near a bathroom at all times. I suggested he walk laps at a local mall, but he resisted the advice, noting that even there, the restrooms were too far apart. He looked at me as he spoke, simultaneously resigned and defiant, challenging me to suggest something else so that he could tell me why it wouldn?t work.
A woman with her hair tied back in two thick braids had recently been asked out on a date. She was excited but afraid. What if she needed to go to the bathroom just as he was trying to kiss her? When would be the right time to tell him about her illness? The group advised her to bring a purse large enough to carry a change of clothes, in case she had an accident during the date and to keep her mouth shut about her health until she?d decided she could trust him.
?An accident?? I inquired.
?Yeah, you know, an accident,? said the moderator, himself a longtime sufferer. ?Pooping your pants. Hasn?t happened to you yet??
When I told him no, it hadn?t, he grinned and exchanged knowing smiles with the other group members. ?Give it time,? he said. ?It happens to everyone.?
I didn?t respond. Instead I focused on the ball of amorphous heat rising in my stomach, a wave of anxiety so strong I excused myself and trotted to the bathroom. I splashed cold water on my face and stood silent for a moment, feeling my heart pound like a jackhammer against my ribs. Like Ebenezer Scrooge accompanied by the Ghost of Christmas Future, I worried that these patients were harbingers of what was to come, of the inevitability of my devolving quality of life.
I stared at myself in the mirror and took long deep breaths until I was calm enough to return to the meeting. But by then I was no longer listening. I sat through the rest of the meeting timid and detached, willing it to end as quickly as possible.
Afterward, in the car ride home with my fianc?, I began to realize what had happened. Before even walking into the meeting, I had subconsciously imagined that each group member would be like a rock cairn and would, collectively, mark the trail I would follow back to something like my pre-illness life ? a fun, unimpeded life that could exist in spite of my disease.
But it had never struck me that like me, they too were struggling, were scared and unhappy, and that it was our shared trepidation that had delivered all of us to the meeting that evening. They weren?t there to divulge the secrets of their success. Rather, they too were looking for the same hope as me.
I had thought that my fellow patients could teach me to stop being afraid of my disease, that they could show me how to have faith in whatever unknown lay ahead. But driving back home, staring out the window at the corridors of darkness on the highway, feeling my fianc??s hand on my thigh and trying not to cry, I understood that I had been wrong. Yes, the support group members could instruct me on managing the logistics of my disease ? things like nutritional supplements, questions to ask my doctor or remedies for thinning hair brought on by certain medications.
But ultimately, I couldn?t rely on others to teach me how to believe in my future. I couldn?t expect a support group to give me a get-out-of-jail-free card so that I could avoid facing my fears. Instead, I would have to look inward for that.
Ms. Berlin, who works at a nonprofit organization in Durham, N.C., is an occasional contributor to Well and Science Times, writing about life with a chronic illness.
By LOREN BERLIN, New York Times
June 15, 2010
My fianc? drove me 30 miles to the nearest support group meeting, and I was eager to attend.
At the age of 29, I had recently received a diagnosis of ulcerative colitis, a chronic disease of the colon characterized by intermittent cycles of potentially debilitating illness and completely normal living. Although my family and friends had been great, they couldn?t fully relate to my health problem.
None of them had experienced internal bleeding and diarrhea so severe that they had lost five pounds in a week and were on the verge of hospitalization. None of them were absorbing the reality that the only cure for a disease they?d never heard of was the surgical removal of the entire large intestine. They couldn?t counsel me on which foods to eat, what side effects to expect from my medicine or how to rediscover my sensuality after months of enemas and colonoscopies.
But I felt certain that the support group members could.
I entered a small waiting room tucked into the back of the hospital and took a seat in the ring of chairs. There were maybe a dozen of us, and we went around the room introducing ourselves. There was a gaunt, hobbled man in his late 20s who had recently filed for disability status because he was too sick to work. There was a high school girl who sat silently, her eyes glued to the floor, her jeans hanging from her hips like gunnysacks, while her mother explained the many and varied treatments that had failed to induce remission in her daughter. There was a woman seated beside me whose intestine had perforated during a layover in an airport while on a business trip.
We talked. The man on disability said he wanted to exercise more but worried that he needed to be near a bathroom at all times. I suggested he walk laps at a local mall, but he resisted the advice, noting that even there, the restrooms were too far apart. He looked at me as he spoke, simultaneously resigned and defiant, challenging me to suggest something else so that he could tell me why it wouldn?t work.
A woman with her hair tied back in two thick braids had recently been asked out on a date. She was excited but afraid. What if she needed to go to the bathroom just as he was trying to kiss her? When would be the right time to tell him about her illness? The group advised her to bring a purse large enough to carry a change of clothes, in case she had an accident during the date and to keep her mouth shut about her health until she?d decided she could trust him.
?An accident?? I inquired.
?Yeah, you know, an accident,? said the moderator, himself a longtime sufferer. ?Pooping your pants. Hasn?t happened to you yet??
When I told him no, it hadn?t, he grinned and exchanged knowing smiles with the other group members. ?Give it time,? he said. ?It happens to everyone.?
I didn?t respond. Instead I focused on the ball of amorphous heat rising in my stomach, a wave of anxiety so strong I excused myself and trotted to the bathroom. I splashed cold water on my face and stood silent for a moment, feeling my heart pound like a jackhammer against my ribs. Like Ebenezer Scrooge accompanied by the Ghost of Christmas Future, I worried that these patients were harbingers of what was to come, of the inevitability of my devolving quality of life.
I stared at myself in the mirror and took long deep breaths until I was calm enough to return to the meeting. But by then I was no longer listening. I sat through the rest of the meeting timid and detached, willing it to end as quickly as possible.
Afterward, in the car ride home with my fianc?, I began to realize what had happened. Before even walking into the meeting, I had subconsciously imagined that each group member would be like a rock cairn and would, collectively, mark the trail I would follow back to something like my pre-illness life ? a fun, unimpeded life that could exist in spite of my disease.
But it had never struck me that like me, they too were struggling, were scared and unhappy, and that it was our shared trepidation that had delivered all of us to the meeting that evening. They weren?t there to divulge the secrets of their success. Rather, they too were looking for the same hope as me.
I had thought that my fellow patients could teach me to stop being afraid of my disease, that they could show me how to have faith in whatever unknown lay ahead. But driving back home, staring out the window at the corridors of darkness on the highway, feeling my fianc??s hand on my thigh and trying not to cry, I understood that I had been wrong. Yes, the support group members could instruct me on managing the logistics of my disease ? things like nutritional supplements, questions to ask my doctor or remedies for thinning hair brought on by certain medications.
But ultimately, I couldn?t rely on others to teach me how to believe in my future. I couldn?t expect a support group to give me a get-out-of-jail-free card so that I could avoid facing my fears. Instead, I would have to look inward for that.
Ms. Berlin, who works at a nonprofit organization in Durham, N.C., is an occasional contributor to Well and Science Times, writing about life with a chronic illness.
