Let me (Jesse) preface this post by saying I am not a mental health professional. I am simply writing about my own experience in hopes that someone reading can find support and hope.
Last month, I shared my story of living with Ulcerative Colitis. Experiencing diagnosis related depression has been a large part of that story, so I felt like it deserved it’s own post.
Depression was never really something I experienced or struggled with throughout most of my life. Anxiety always used to be my big mental health hurdle. Starting in childhood, anxiety was a constant, nagging presence in my life, so much so that my family deemed “Don’t Worry Be Happy” by Bobby McFerrin as my theme song… I was familiar with anxiety, as uncomfortable as it was, I knew how to recognize it. Depression, on the other hand, snuck up on me.
Ultimately, I think my depression was the result of completely losing myself in my disease over the course of several years. In the early years of my healing journey, I never saw immediate success after implementing dietary, lifestyle or medication changes. I saw some success here and there, but I always felt sick. Looking back, I realize that should’ve been my first clue that something more that my UC was hindering my healing.
After every unsuccessful treatment, supplement, medication, diet or lifestyle change I just fell deeper and deeper into this hole. I felt more and more hopeless and more and more discouraged. It felt like no matter what I did, nothing was “good enough” to make me well again. As much as I wanted to give up, there was something inside of me that wouldn’t allow it. So, I became obsessed with trying to manage my out-of-control symptoms.
I started micromanaging every piece of food that passed my lips. I was terrified of trying reintroductions or eating in restaurants, in fear that it would push my body over the edge and I wouldn’t be able to get it back. I did endless internet research on different foods and supplements, hoping to find the “magic bullet” that would cure my disease. My life became so rigid. There was no room for flexibility, and eventually that became unsustainable.
I started to become resentful that my lifestyle and eating habits were so rigid. Even though I was in a mess of my own making, it just felt like if I stepped one toe out of line, my body would crumble into pieces. I felt fragile and I was pissed. I was filled with self-loathing. I was mad at God for making my body this way. I was mad at the world for not responding to me in the way I needed. I was mad at my friends for not saying the right things. I hated my body for betraying me. I hated this lot I’d been handed, and wanted nothing to do with it.
Even though I was still angry, I grew tired of fighting. I started to isolate myself. I only left the house for survival obligations, like work and grocery shopping. I stopped socializing. I felt angsty and misunderstood by the world. My health was all consuming. I completely lost myself in my disease. When I looked in the mirror, I didn’t see Jesse St. Jean. I saw Ulcerative Colitis. I forgot who I was.
In the fall of 2018 I started studying with the Nutritional Therapy Association (NTA) to become a Functional Nutritional Therapy Practitioner (FNTP). At the time I thought, “If no one else can figure out what’s wrong with me, then I’ll do it myself”. Little did I know that pursuing that certification was the first step in reclaiming my identity. For the first time in years I was actually doing something because I wanted to and that brought me joy. It was during this course that I began to realize I was struggling with depression and my loss of identity.
Little by little I started pushing myself to do things that scared me, like reaching back out to friends to chat over a cup of tea or trying to exercise again. I felt like I was starting to re-engage with the world around me and meet this new person I was becoming. I found that the more I started to put myself out there, the more confident I became and the more sure I felt of who I was and who I wanted to be.
I honestly don’t know how to describe it, but it just felt like this switch was suddenly flipped inside of me. I was tired of sitting around wishing I could be different. I wanted to go after it, so I finally did. I want to say that the “switch flipping” was prompted by the new support and collaboration I felt in my new health care team or the fact that I was finally on the professional path I wanted, but truthfully, I just think I finally reached a place of acceptance of my disease and the new identity that came with it.
I’ve worked in the world of grief and bereavement for years, but going through the grieving process yourself is a whole different story and, reflecting back, that’s exactly what I did. When people think of grief, I think many people view it as a temporary stop or emotion one feels in response to loss, but it is so much more than that. Grief is a journey that, quite frankly, never ends. You don’t just stop or “get over” grieving. You eventually reach a place of assimilating that grief into your life where it becomes your new normal. Grief also doesn’t only happen in response to the loss of someone we love. It happens when we experience ANY kind of loss, whether that be the loss of health, independence, identity, a relationship…
So if you are in the midst of your own grieving process or experiencing depression in response to your disease, I’ve been there. I get it and you’re not alone. I just encourage you not to walk your journey alone. It’s hard to reach out for support, but even having one person in your corner can make a huge difference. Maybe that person is a counselor, a spiritual leader, a friend or a family member. Professional counseling has frequently been present in my journey and now virtual counseling is even an option.
Also know that grief is a season. It may last longer than you want it to, but it won’t last forever. You are a strong, bad-ass autoimmune warrior and don’t let anyone tell you differently. You got this!