As many people in the Interstitial Cystitis community know, I have been an active voice in the IC and Chronic Pelvic Pain awareness movement for almost 10 years. When I was first diagnosed in 2006, after years of unanswered questions, debilitating pain, and feeling completely isolated, I began a journey that would enable me to help thousands of chronic pelvic pain patients feel less alone, more educated, and stronger as they began the very difficult and lengthy healing process. For me, those years were the most gratifying, aggravating, heartbreaking, rewarding, and life changing times of my existence and the experience has forever shaped who I am as a chronic pain patient and as a woman today.
Throughout the years I happily put everything I had into furthering our cause because it truly made me feel good to do so, but as I got closer and closer to my 30th birthday I found myself becoming more unhappy with what I had and had not accomplished for myself on a personal level. While I always had the support of those in the CPP community, I kept feeling as though I had so many loose ends that hadn’t been connected in my own journey and in turn began to bitterize my feelings about the work I was doing along the lines of advocacy. It was getting harder and harder to manage my online support group of 1500+ chronic pelvic pain sufferers, not because of the demands of the job, but because I found myself dreading the redundant nature of a very common situation. Where I once enjoyed logging on and discussing new treatment options with newly diagnosed patients or sharing my story with the sole intention of giving others a form of hope, I became increasingly frustrated with the whole process.In truth, the feelings I was having shocked me to my core. After all, I had worked so hard to inspire and support so many others who were struggling with the same issues I was also dealing with on a daily basis. How dare I be frustrated? How dare I even consider neglecting the people who often looked to me for support, advice, and answers? How dare I turn my back on people who so often feel alone in their pain when I myself had once been in that same situation. I became overwhelmed with the guilt of the feelings I was having and decided that it was only a phase, something that I needed to just push through in order to continue fighting the good fight. So I pushed on without ever taking a second to really consider the root of the feelings I was having.
In the months that followed, I continued the mission. Which simply meant– Write blog, create awareness project, manage support group, answer emails. Week after week I played the same role on repeat, pushing harder than I had ever pushed before as a way to atone for the feelings I had felt months earlier when I wanted to leave it all and walk away. I found myself completely focused on IC and why it has the ability to destroy lives and love the way it does and became engulfed with everything that had to do with “sick”. I spent every night after work discussing sick things with sick people about unmanageable symptoms and unhealthy relationships while feeling sick myself. Essentially, I was treating sick animals all day long only to come home and continue to surround myself with more sickly subject matter. My entire day was consumed in talk about unhealthy things and not only were words portraying unhealthiness coming out of my mouth but the symptoms of unhealthy were also being demonstrated by my own being. As the cycle continued, I began to focus solely on how terrible I felt and how in feeling so terrible, parts of my life had been taken away that I missed terribly. It was an easy cycle to fall into and Proved to be an even harder one to break. As the cycle continued to take its toll, it changed the way I experienced certain aspects of my life and changed the way in which I reached out to others. I quickly started to become something I had worked so hard to never be. Cold, bitter, victimized, and for lack of a better truthful word, pathetic. I was unhappy, unwell, and unmotivated and I knew t that moment something had to change.
I began to evaluate my daily routines and started to make notes of what specifically made me unhappy about each event I was involved in. I learned that I was feeling as though I had been plateaued since being diagnosed in 2006 and while I excelled at helping others, I had stopped doing things to help myself unless they were IC related. I had the realization that in trying to do everything in my power to manage my symptoms so that IC no longer controlled my life, IC ultimately was the only thing that had full control of every aspect of my life. I had inadvertently made it so that IC was the only thing that defined me. I had inadvertently made it so that my much needed hobby consisted only of activities that forced me to feel an obligation to others because in the beginning of my struggle before being diagnosed, there weren’t many people who had felt an obligation to help me.I had inadvertently made it that all of the other hobbies that I used to enjoy were pushed into a pile in the corner that had been forgotten and ignored. Ultimately, I had the realization that I didn’t want to walk away because I didn’t believe in the cause anymore or because I didn’t want to help people. I didn’t want to walk away because the people looking for answers and advice didn’t deserve it or weren’t worthy. I didn’t want to walk away because it was clear that making those outside of the chronic pain community willingly educate themselves on these conditions would be a life long battle and one that would not ever be easily won. I was walking away because I dedicated much of my spare time after I got diagnosed and learned to manage my conditions helping others and in turn forgot to continue to help myself. This revelation didn’t mean that I needed to feel guilty about these feelings as I once had but instead meant that I needed to change my focus for a bit with the hope that in focusing on things other than all things sick, I may be able to heal parts of me that were still able to be healed by my own self.
I found this eye-opening because when IC became a major player in my life story, it helped take away dreams of mine that nothing had ever been successful at taking away before. It destroyed friendships and career opportunities and became a whirlwind of chaos for the paths I had always wished to take. I harbored the disappointment and heartbreak about the so called “loss of dreams” deep down for years while constantly telling myself that those dreams were a thing of the past–that those dreams changed because I had a drastic life alteration when I was diagnosed with some very unruly and unpredictable incurable conditions. It wasn’t until I had these revelations that I remembered how important it is for the healing process to continue to do things you love. Even if you can’t do them the same way you used to or even if you’re unable to make them your main priority, it is imperative to incorporate positive things in your life. Even if life seems to hand you nothing but negative pissed off lemons, you must remember the things you love. I believe with every fiber of my being that if you continuously focus on the bad and the pain while surrounding yourself with the unhealthy, you begin to decrease your mind and hearts ability to heal itself. It is proven that unhappy people have a harder time healing…both from wounds and injuries to viruses, colds, depression, etc. When the mind is unhappy, the body is unhappy and when the body is unhappy all of the body systems are unable to support a healing environment thus driving a chronic pain patient deeper into the abyss of the pain cycle.
My moral is simple. It is up to us to educate ourselves on our conditions and to learn ways to best manage our pain, symptoms, and struggles in the ways that benefit us the most. It is also up to us to realize that when you surround yourself with the negativity that comes so easily with chronic pain conditions, it is easy to forget that through it all there are still things we are great at; There are still things we need to do to feel complete within ourselves. Ultimately, our lives are still our own to live as we wish. Maybe these conditions make us alter the way we go about doing the things we love but we should NEVER, allow these conditions to convince us that pain is all we are. We should never allow our pain to take everything else we love away from us. Even if you can only jog 5 steps a day or can only make it through the first 20 min. of a movie in a theater before having to use the bathroom, it means we are still in control of something. If you love the movies. Go. Sit in an end seat and instead of being embarrassed to have to keep getting up to try to pee, be proud of yourself that you didn’t let it win. Sure, it’ll alter how we achieve our dreams from here on out, but who cares? I mean, really…who cares? Our lives are not for anyone else to live. They are our own and they can be nothing more than what we make of them.
Stepping away from the advocacy work for the last year has been a blessing for me. Am I in the best of health? No. Why? Because I over did it. Did I accomplish everything I used to dream about? Not yet. But have I started to remember why these were my dreams in the first place? Without a doubt. Was it worth it? I give you a resounding hell yes! The truth is, I don’t care if I’m in a bit more pain than I was yesterday because for the first time in 10 years I was able to record a song in my studio. I don’t care if my usually managed flare is a bit more obnoxious and horrid today because yesterday I made and ate the best damn hot wings of my life. I enjoyed it. The pain will come and go– It’ll wax and wane caused by something we knowingly did and sometimes it’ll wan and wane because this pain of ours simply can’t be trusted. My point is, many of us have learned how to live with it thus far but living with it shouldn’t mean surrendering our joy in the little things that we love.
For any unanswered questions, I’d like to make it clear that I’m not walking away from advocating for our awareness. I just needed some time to remember who I was before the pain and who I still am with the pain. I will continue to fight for us, speak to whoever will listen, and do my best to make others know they are supported but this time around, I come first. It took turning 30 to realize that putting me first isn’t selfish. It’s not wrong and it’s not cruel. If anything, it is enabling me to be able to do the things that I love to do longer and what better reason is there than that?