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Navigating Mental Health with Interstitial Cystitis

Navigating Mental Health with Interstitial Cystitis flowers coming out of human head

Navigating Mental Health with Interstitial Cystitis:

 I’ll never forget the evening of May 1st, 2021—the sky menstrual, hints of orange and red peaking through. Cleaning my dishes, and listening to the sound of television in the background, I lurched forward in pain as I felt a sudden swelling arrive at my midsection. Shrugging the occurrence off as a pre-menstrual cramp or a post-workout muscle ache, I kept scrubbing the grit from underneath my nails between breaks. Though a satisfying distraction, my body was unprepared for what it would face minutes later. Rushing to the bathroom with my hands wrapped around my midsection, I cried as hot burning urine exited my body. No amount of antibiotics, water, or even pelvic floor physical therapy would bring me back to the time I remembered using the bathroom without thinking twice. What initially began as a casual trip to the bathroom quickly shifted into the day my body began its nearly three-year battle with the cruel and insidious symptoms of Bladder Pain Syndrome/Interstitial Cystitis.

All of us remember the moment the human body’s mysteries forever changed our lives, the unanswerable questions that continue to keep us up at night: But why did it happen then? Could it still be an untreated infection? What if it’s really not this diagnosis but another? Though those questions may never cease completely, we can mindfully lean into techniques and advocacy steps to quiet their noise.

As a psychotherapist specializing in chronic pain, specifically pelvic pain, and as a human being who experiences pelvic pain, I know firsthand that once pain becomes part of the wallpaper of our everyday lives, most of us will do anything to find ways to reframe and re-engage how that background informs what else is possible for us in our lives. The following article will enumerate some of the ways you can continue to protect your mental health, advocate for your body whilst navigating the medical-industrial complex, and find re-imagined thriving amongst a soundtrack of discomfort.

Incorporating Nervous System Downregulation Tools

Mental health spans every aspect of the human experience. In a world that already places an extreme tax on our nervous systems and abilities to safely curate containers of rest and ease, mental health and therapeutic services are often not emphasized as critical parts of our healing journey.

I encourage all of my patients to integrate forms of enjoyable, accessible mindfulness and downregulation into their days as a means to help get the body out of the constant fight state most chronic pain sufferers operate from. Take the time to find a provider who can help guide you through different forms of breathwork, who can offer you skills-based sessions that support ways to offer your body extra care as you navigate daily tasks, and who can create a loving oasis for you to un-mask and unload. These are all deeply important parts of thriving and recovery whilst living with a chronic pain condition.

Nervous System Downregulation Techniques:

The 54321 exercise, also known as the 5, 4, 3, 2, 1 method, is a mindfulness technique that can help reduce anxiety and manage acute stress. It involves focusing on your five senses to help you anchor yourself in the present moment. Here are the steps:

      1. 5 things you can see: Look around and name five things you can see. For example, you might notice a pen, a spot on the ceiling, a poster, or a plant.

      1. 4 things you can touch: Focus on four things you can touch, like your hair, a pillow, or the ground.

      1. 3 things you can hear: Name three things you can hear, like the ticking of a clock.

      1. 2 things you can smell: Notice two things you can smell, like perfume or a snack.

      1. 1 thing you can taste: Focus on one thing you can taste, like that snack.


    How do I do diaphragmatic breathing exercises?

    When you first learn the diaphragmatic breathing technique, it may be easier for you to follow the instructions lying down.

        1. Lie on your back on a flat surface or in bed, with your knees bent and your head supported. You can use a pillow under your knees to support your legs.

        1. Place one hand on your upper chest and the other just below your rib cage. This will allow you to feel your diaphragm move as you breathe.

        1. Breathe in slowly through your nose so that your stomach moves out, causing your hand to rise. The hand on your chest should remain as still as possible.

        1. Tighten your stomach muscles, so that your stomach moves in, causing your hand to lower as you exhale through pursed lips (Pursed Lip Breathing Technique). The hand on your upper chest should remain as still as possible.

      Exploring Joy

      We can often forget that pleasure and joy-bearing experiences and activities are still possible for us. Take time to remember and highlight all of the things you can do in your life, even if your relationship to the ways you have historically done them has changed. Find and discover what new pockets of play exist in your life. What foods can you still savor? What new ways of pleasure might you be able to experiment with? What is something you’ve sworn off that perhaps you can gently re-introduce back into your life in a more accessible way? Joy is often one of the biggest protective ingredients when considering a life-preserving cocktail amongst daily struggles with chronic pain.

      Though the above three suggestions just briefly speak to the myriad of ways to still find purpose and meaning in a life greatly affected by physical pain, remember that an empathetic community exists, provers who deeply want to make a difference are there, and you are worthy and deserving of a delicious, dimensional time on this planet while you also navigate your chronic pain.

       


      A Columbia University-trained LCSW, brings a wealth of experience and expertise working with LGBTQ+ and BIPOC patients. As a Black, queer, and trans provider, Sabrina is committed to facilitating trauma-informed and culturally sustaining wellness and joy for all patients navigating chronic pain, relational distress, anxiety, and dysregulation. With personal experience as a pelvic pain sufferer, Sabrina has become a leading psychotherapist specializing in the intersection of pelvic pain and mental health. Learn more about Sabrina and their practice, here
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