You Gotta Have Friends : Good Friends
I feel as if I suffered with amnesia when I was diagnosed with IC.
I just can't remember how I felt before my bladder changed my life.
I can't imagine how more independent and adventurous I was. I lived
in different cities and loved to travel. I had a fast car and I loved
to be with friends, although I wasn't always well.
In my late teens
and early twenties I suffered with chronic fatigue syndrome, and I
always had to empty my bladder more than other people. However,
I still took on new challenges and tried hard to live my life as fully
as possible. In my early thirties I experienced colon problems, and
in my mid-thirties I suffered with muscle pain and stiffness. I still
loved to travel and see new places with friends. But, when my bladder
symptoms set in, my life like many others with IC, drastically changed.
The strange thing
about my IC is that I can't remember when I forgot what life felt
like before IC. What's also strange is that I don't miss all of the
things I used to do. I realize that I was approaching middle age when
I was diagnosed. Perhaps I was in the process of settling down anyway.
I may never know, but I do know that the smaller things in life took
on new importance. And, I believe that it's a blessing I can't remember
life before IC. Nature has a funny way of working. She can be kind.
My mother always told me that our eyesight fails as we grow old so
we can't see our wrinkles.
I do not like about IC (obviously, besides the pain and other symptoms)
is the isolation, the cancelled plans, the endless explaining and
the running dialogue I constantly have with myself - "Should
I get up now?" "Should I go now?" "How long will
I have to stand in this line?" "Can I go to this dinner
party?" I also dislike feeling different, and/or conspicuous
when I repeatedly cross a crowded room to use the bathroom. I can't
say that my friends don't understand. I don't feel self-conscious
when I am with them. They are wonderful and most of them are caretakers,
but when they ask me to do something fun and spontaneous, I usually
It's very difficult
to have faith in myself (my bladder) and faith in others to be there
for me. However, when I do plan time with friends, it is almost always
valuable. Good times equal success, and success builds confidence.
Old friends remind me of how I have not changed, and how they don't see me as I see myself (my needs) with IC. Old friends also remind me that I am still a whole person, which is sometimes easy to forget. Too often, the isolation I experience takes me away from myself, my identity. Being around others can be very affirming. Friends help me to put my life back into perspective, gain self-esteem and confidence.
Last month Andy
and I had a wonderful visit with friends in North Carolina. We looked
through photos and talked about the old days. We went out to dinner
and to a jazz club. The visit was a gift. It truly replenished my
soul. I got in touch with my old self and it felt great.
I am lucky to
have friends like Barbara and Robin. Robin cooked a special dinner
for me. Barbara constantly checked in with me while we toured Asheville.
She pointed out bathrooms, and handed me menus before we sat down
in restaurants. But, I believe the best thing she did was shine some
light on the truth. After I complained of feeling conspicuous at a
particular restaurant (when I visited the bathroom too often), she
told me that the only person who minded, or cared was Me. How
right she was! I now wonder when I began to project my feelings onto
others. I also wonder how many other IC patients have done this; experience
their differences during uncomfortable times.
I suppose our special needs can make us feel judged. When one of my IC friends went to school to become a social worker she had to complete her courses in three years, instead of two. When she was questioned about this she felt badly about herself. She now works four days a week. Again, she is questioned and what is worse is that some people see her as spoiled. If they only knew how much work life with IC is.
On a positive
note, last night we went with my mother to the restaurant that I mentioned
earlier. I replaced the old dialogue I usually have with myself in
uncomfortable situations with a new mantra: "No one really minds,
or cares." It worked, and I felt something inside emerge from
the past, a very good feeling. When I woke up this morning I realized
that the self-consciousness I sometimes experience has occurred over
the years of dealing with IC. I also realized how important it is
for me to routinely meet with other IC patients. My new realizations
are very timely. This fall Andy and I are starting a support group
at Tulane Hospital and Clinic, and we hope that as people pull together
during these difficult times there will be more understanding, acceptance
and compassion of people's differences.
Gaye is an author and IC patient & support group leader who has been involved in IC work for years. In 1990 she published "Stretch Into a Better Shape" and produced a stretching and exercise video for IC patients in 1993. She is a specialist in Aston-Patterning movement and muscle re-education.
Andrew has over ten years of clinical and health care management position. He is currently the Administrator of Maison Hospitaliere, located in New Orleans. Andrew holds a Ph.D. in Special Education, a M.A. of Health Adminstration, M.A. of Clinical Psychology.
They welcome your comments and feedback on their articles at: The Sandlers