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5 Ways to Use ICA’s Online Support Community

From the Spring 2015 ICA Update

“3:55 a.m. and I’m awake with unbearable pain,” one IC patient wrote recently. And while the middle of the night is no time to reach out to a doctor, or even a family member or friend, there was someone listening.

On ICA’s Online Support Community, others with IC responded, encouraging the patient to check with her doctor about getting additional pain medication. “I hope you are better soon and the pain subsides,” another patient wrote in response. “I was awake around 3 a.m., too.”

To help connect IC patients, families, friends, and caregivers, ICA partnered with Inspire, a technology company providing support groups for dozens of patient advocacy organizations, to create the free ICA Online Support Community, available at www.ichelp.org/OnlineSupportCommunity.

The community has more than 9,000 members. Here are five ways the ICA Online Support

Community can help you, too:

1) Get immediate answers.

When one IC patient asked if unfamiliar symptoms were more likely to be an IC flare or a bladder infection, others quickly weighed in with their thoughts. Others have asked about prescriptions and side effects, treatments like Botox, and for recommendations of IC-friendly urologists and specialists in their area.

As with any other support group, the advice on the ICA Online Support Community is for general informational purposes only and is not intended as a substitute for professional medical advice and treatment. “Remember everyone is different,” one patient cautioned.

2) Learn how to manage IC.

With diet such an important part of managing IC for many patients, it’s not surprising there’s a host of discussions about what does—and doesn’t—trigger painful flares. One discussion involved red vs. white wine, with respondents suggesting that the question, instead, is finding low-acid wines—and eating cheese with it to help reduce acidity further.

Some patients discuss how to sleep comfortably. “Sleep is a beautiful thing,” one wrote. Others focus on the opposite problem—staying awake. “After years of trying to treat health problems and going without caffeine, I am now at the point of feeling like I need a jolt to help me get through the day… what do you do to stay awake without coffee and tea?”

3) Get tips for managing the rest of your life.

Support group participants also discuss a wide range of issues that those with IC must face in their day-to-day lives—everything from whether it’s okay to use handicap parking tags to disability applications and managing health insurance issues (“read every word of your insurance policy,” one participant advises).

A theme that comes up frequently is helping spouses and others understand and be more supportive. “You might want to print and have ready info on IC and throw them when people give you a hard time,” one person suggests. “You’re on a new adventure and you need all the support and love from your family, friends and medical team.”

4) Share your own story.

In online journal entries, support group participants share how they are doing and the challenges they are facing. New IC sufferers, in particular, discuss the common challenge of getting an accurate diagnosis.

“Most people with IC will tell you they had to kiss a lot of frogs before they found their prince/princess,” one said about the search for an understanding urologist.

5) Connect.

While understanding of IC has grown by leaps and bounds in recent years, too many people still suffer alone. The Online Support Community is just that—a community—that helps people feel less alone.

One newly diagnosed first-year college student asked if others her age had struggled with IC and balancing school responsibilities. Several other college students responded. “I believe things will get better for you and I’d be happy to offer sympathy and support,” one said.

Connections help keep people going. “Thank you so much for your encouragement,” one patient wrote. “It really does mean a lot. I am afraid I have been depending too much on a magic pill to cure me and balking against doing the real footwork that would help me the most… I need to get busy getting better.”

“Before I found this site I thought I was going crazy,” another wrote. “I now know there are many people going through the same thing… Hang in there and vent all you want—it helps!”

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