Coping | IBD
If you gave me a choice between talking about my violent diarrhea or my mental health difficulties, I would pick the violent diarrhea every time. I am the last person you would expect to write about mental health and self-love with IBD. And yet, here we are.
Life started kicking my butt long before my Crohn’s diagnosis three years ago. Since then, my physical health has been on a downward spiral, with four additional chronic illness diagnoses and endless amounts of prednisone. Throughout these last few years, my mental health has been going down the toilet just like everything else.
In spite of my spiraling physical and mental health, I was hesitant to go to the short-term residential mental health unit of my regular hospital. I had a million reasons not to go. But, in the end, most of my fears were unfounded. No one treated me like a pitiful sick person. No one recoiled in horror when I said that I’m 25 with five chronic illnesses and sometimes feel like I am losing myself while living. No one told me to “look on the bright side” or that “it could be worse.” I spent my days there grieving and healing, amongst other people who understood that life is hard, and sometimes you need time to let yourself be emotional about it.
None of the staff criticized my enormous medication list or told me that I could miraculously cure my physical illnesses if I swapped my drugs for yoga. When my digestive system went especially haywire one morning, a staff member got me what I needed to get cleaned up and told me about someone in their life with Crohn’s. When I profusely apologized to the staff who had to chase down bananas and plain noodles for me (two of the four solid foods I can eat), they told me, “you are just preparing us for the next person in your shoes” and made sure the hospital dieticians came to see me. At night, I felt safe in my body for the first time in years, knowing that nurses were close by and the ER was just down the hall.
Of course, there were moments when I felt like the odd one out (mostly whenever food appeared or was discussed), and being stuck in medical settings gets old when you have IBD. But I wish someone had told me when I was first diagnosed that struggling with your mental health is part of IBD. I wish someone had told me that needing additional mental health support–especially when IBD repeatedly demolishes your mental health progress–does not make you a failure. Part of what made me strong enough to seek help was a fellow Girl With Guts telling me about her own mental health hospital stays. So, if someone giving you permission to seek out mental health support helps you, then this is me giving you permission and encouragement.
When I got to the hospital, I did not think I had any love left for myself. I have spent years giving my body everything, only to be betrayed time and time again. I thought about all the trauma and loss in my life, the mental illnesses and the physical ones, and felt floods of panic and despair. One night, one of the counselors said to me, “you are not too much.” I scoffed and thought about the “exceptional needs” label on my medical chart that qualifies me for case management services. Was that not the clinical definition of too-muchness? I told him I was sick of being a patient all the time, of constantly interacting with medical professionals baffled and frustrated by my difficult case. He said, “try to think of yourself not as a patient, but as someone who consistently believes that there’s a chance things could be better.”
At that moment, I was certain he was full of nonsense. But then I started thinking about all I have done for my body, all the ways I have fought for every ounce of quality of life that I have, and all of the ways I continue fighting. I thought about the 35+ pills I begrudgingly take every day, the 6 injections I give myself a month, the countless colonoscopy preps I have gagged down, the thousands of hours I have spent waiting on hold or dealing with insurance barriers to get myself what I need to survive. I thought of all the other people I know with IBD who care for themselves in similar ways and wondered, “Are these not acts of self-love?”
Of course, self-love is about so much more than doing what you need to do to survive. But I thought I didn’t have any self-love at all, and could not imagine conjuring it. Now, I realize that I do have some self-love. It is just a teeny tiny seed, but it is there. I do not expect it to suddenly blossom into a giant tree of self-love, but I can see myself slowly nourishing it.
And on the days when self-love still feels like a pipe dream, I think about all of the other Girls With Guts out there. I look at the stack of encouraging greeting cards from Girls With Guts all over the country who sent me mail while I was in the hospital as part of the “Love Your Guts Mail” program. I think about how we lift each other up out of despair and dream of how we can pave the tumultuous path to self-love together.
???? I needed this.