If the ICN has helped you
Please Read Our Disclaimer
Created: October 11, 2000
and/or given you comfort
during those difficult nights,
we hope that you will become
a subscriber.
Susan Wells &
Jill Osborne
There is simply no getting around it-a diagnosis of interstitial cystitis affects more than our bladders. At times, this illness calls into question our very sense of who we are, and how we can be partners in healthy, intimate relationships.
How do we conquer our self-defeating fears and move forward with our lives and our relationships? Perhaps the following ideas will help:
- Remember, we are
not our illness! We may have IC, but IC doesn't have us. Though illness
is a fact of life, it does not change our ability to love and be loved.
In fact, as we struggle to redefine what is important to us, many of
us may find that we rededicate ourselves to the people we love the most.
- Face your fears
about illness and sexuality. For those of us who are married or in committed
relationships, we worry that our spouses or significant others will
tire of us. Will they have an affair? Will they turn away from us out
of shame? Single people with IC face equally devastating thoughts. They
often ask themselves, "Who would want me?" and, without realizing it,
take themselves out of budding relationships. Some stop dating altogether.
- Recognize that
while IC may throw a monkey-wrench in your most intimate encounters,
it does not signal the end of a satisfying sex life. Above all, communicate
your needs to your partner, and expect him/her to do the same. Try positions
that are more comfortable for you. Use your very best self-care (pain
medications, heating pads, etc.) both before and after sex. Be creative-light
candles, put on music, and wear something soft against your skin. Above
all, never let IC rob you of feeling sexy. It's a disease, not a life
sentence of celibacy!
- Learn to take
care of yourself. This is especially difficult for women, who are used
to putting everyone else's needs before their own. But for the health
of our bodies and our relationships, we have to give ourselves the time
and permission to rest and heal. Learn to ask for help. Even small children
can sort socks or set the table. Expect your loved ones to be upset
initially by a disruption in routine, but give them credit for being
able to adapt to your changing needs.
- Develop a system
for managing your anger, and encourage your spouses/significant others
and children to do the same. Constant pain and a changing sense of self
will likely make you angry, and the changes your loved ones see in you
may anger them. Make a commitment to dealing with your anger every day.
You might, for example, set aside 15 minutes each day to exercise, hit
a pillow, or meditate-whatever form of anger management works for you.
You'll return to your relationships with a better sense of balance and
more appreciative family members.
- Focus on the positive. Yes, this sounds trite, but it works. There are times when IC will seem to consume your life. But you can still watch videos or cook and, on your worst days, you can call a friend and help someone else. Focus each day on taking just one step forward for your health and your relationships. Break the isolation and try to get out of your house even for just 10 minutes. We tend to become focused inward when we have a painful, disabling condition, and sometimes just the effort of saying "hello" to someone else can lift us outside of ourselves.
In the final analysis, we would do well, as Buckminster Fuller once said, to think of ourselves as a verb-a human being, not a human doing. We need to set aside the "could haves" and "should haves" that plague us, and celebrate the wisdom and the strengths we have gained by learning to live life well in spite of IC. People with IC are some of the most compassionate, creative, and emotionally healthy people we know!
Susan Milstrey Wells is the author of A Delicate Balance: Living Successfully with Chronic Illness (Perseus Books, 2000). Jill Osborne is founder of the IC Network.