Coping | Daily Life | IBD
I wasn’t going to write a blog this month. The text apologizing to the Girls with Guts Blogging Coordinator saying that I am just too cranky and overwhelmed this month was already written as a draft when I woke up at 3 in the morning and started writing this blog.
Sometimes, I have nothing positive to say about my illnesses, no message of hope to send to others, no meaning I can make from my experiences. Sometimes, all I have is despair, grief, anger, hopelessness, and frustration. “No one wants to read about this,” I tell myself. I often fall into these pits of despair, or “cycles of doom” (as our blogger Jenny calls them), about my health for days, weeks, or even months at a time. I withdraw from the people around me, and ask myself things like, “Why me? Why do I have to deal with this? How can I go on like this? What is going to happen to me?”
People love to say things like, “What doesn’t kill you makes you stronger!”, but I often find myself thinking, “What doesn’t kill me today almost has and still might someday.” Sometimes, there is no silver lining, there is no greater purpose, and pain is just pain. I am grateful for the months where I have the strength and capacity to look at the larger picture and write powerful blogs about connection, meaning, and hope. But this is only one side of my experience, and I think it’s equally important to give voice to and honor the grimmer side of my experience.
The “grimmer side of my experience” looks like throwing an internal tantrum about how unfair this all is. It looks like feeling sorry for myself and curling up on the floor sobbing because I’m damn sick of being sick. It looks like complaining about my illnesses on social media and throwing out the rules for how “good” sick people should behave. It looks like moping around for days because there are so many jobs out there that I am extremely qualified for and would love, but am too sick to do. It looks like shaking my fists at the universe while I gag down yet another colonoscopy prep. It looks like fighting off suicidal thoughts and yelling to my therapist that I AM SO TIRED OF THIS.
As chronically ill people, society places so much pressure on us to stay positive, to share lessons from illness, to be resilient, to be wise, and to stay strong for our support systems. But sometimes I just can’t do that. Sometimes I am not strong at all. Dealing with horrendous symptoms day in and day out for years with no end in sight has made it impossible for me to maintain a high level of strength all the time. Past efforts to suppress my grief and anger and constantly “stay tough” have only fueled my suicidal ideation and further distanced me from friends and loved ones.
I always saw strength and giving up as either-or options. You’re either a chronic illness warrior, or you’re giving up on life with illness. Over time, I have come to realize that survival lies in the space between being strong and giving up. During the days, weeks, months where I just do not have it in me to be strong anymore, I try to just be. I let myself feel the grief, the pain, the anger, or I let myself be numb. I let myself have whatever emotions I have, knowing that suppressing thoughts and emotions we don’t want to experience only gives them more power.
In those periods when my strength is low and my spirit has wavered, I do give up. I give up on maintaining a facade of resiliency and superhuman strength. I give up on telling myself to tough it out. I give up on being anything but heartbroken and anguished about my illnesses. I give up on forcing myself to “think positive,” because I know that is not what my body-mind needs in those moments.
Granted, I am not suggesting staying here in despair and hopelessness forever. I believe that wallowing in grief and anger serves a purpose, but so does mustering all the strength within you to laugh, connect, and hope in the face of never-ending illness. For me, survival lies in finding balance. Being stuck in despair for too long is dangerous, and so is trying to be remarkable and holding it together all the time.
I wasn’t going to write a blog this month, because I didn’t think I had anything to give our community right now. I am stuck in one of those “throw a tantrum like a petulant toddler because I’m over this shit disease” phases. But I wrote this blog anyway, because I know I’m not the only one who feels this way sometimes, and perhaps what we all need is permission to talk about these feelings. Permission to say “This is f**king awful and I don’t know what I’m gonna do,” without adding “but I’ll be okay!” Permission to say to each other, “I don’t know if I can carry this pain and grief anymore. Can you teach me how you hold yours?”
There is no roadmap out there outlining how to live with devastating chronic illnesses that knock us down repeatedly throughout our lives. But by making space to talk about how deeply hard life gets sometimes in raw and real ways, we take our individual struggle with pain and despair and make it into a collective struggle to survive. There is still no roadmap, but when we have permission to let our facades of strength down, our collective wisdom and knowledge come together to create a path forward.
In my deepest moments of hopelessness, I tell myself that there’s no way I’m strong enough to survive this myself. And maybe I’m right. I can’t survive these chronic illnesses on my own. I’m not sure that any of us can. But I think we have a fighting chance if we do it together.