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Coping With the 'What Ifs' in My Life With Interstitial Cystitis

Most people can leave the house without a second thought or a detailed game plan in their head. When you have interstitial cystitis, this is often impossible. Interstitial cystitis is a condition that can flare at any time and from any number of stimuli. For me, just getting in the car is sometimes enough to trigger a flare within minutes, which leaves me with intense pain and urgency until I reach a restroom.

That alone causes panic attacks when it happens, but what about beforehand? When I know I’m having a general flare month, I am extremely hesitant to leave the house at all. The fear of being trapped without a restroom when I’m in excruciating pain is a great source of anxiety. One can never be sure a business is going to be kind enough to let patrons use their bathroom. Sometimes there simply isn’t a bathroom anywhere to be found when you need one.

There are ways to cope with this, however. Being too anxious to leave the house at all is a never-ending cycle that often leads to isolation and depression. I continue to take the risk of going out for this reason. I give friends and loved ones the warning that “I may need to turn around and go straight home” so they know what to expect if I have a flare, but I also have tools.

  • There is an app called “Flush” that aggregates user-submitted public restroom locations so you can easily find one nearby.
  • I can send loved ones out in advance to scout restrooms out for me.
  • Calling venues in advance and asking if they have accessible restrooms.
  • Taking medication (in my case, elavil and low-dose naltrexone) can help take the edge off a car flare.
  • Taking a “test drive/ride” before I need to leave for an outing can help ease my worries or get a flare-up “out of the way” in advance.

Despite the very real worries that give me pre-outing-anxiety, I continue to make an effort to get out for my own wellbeing. While I doubt the anxiety will ever be gone, this toolkit is valuable in maintaining some quality of life with insterstitial cystitis.

Getty image by MileA.