It's OK to Be Angry About How IBD Has Changed Your Life
I am writing this blog in the dark. I have turned off all the lights in my apartment, I am wearing sunglasses, and I am angry.
On the surface, I’d tell you that I’m angry because I have been dealing with a chronic migraine for the last six weeks that just won’t go away, despite the best efforts of one of my trusted doctors and me. But, in reality, my anger is much deeper than that, and began long before this chronic migraine came along. Really, I am angry about being chronically ill and the effects it has had on my life.
My Crohn’s diagnosis arrived in 2018, over four years ago now. I found out in December that I am in remission, thanks to the biologic and immunomodulator that I’m taking. Don’t get me wrong, I have endless gratitude for my remission. I’m talking, “bring me to my knees in tears because I never thought this moment would happen” kind of gratitude. But my remission has also brought me something I didn’t expect: anger.
While I dealt with the worst of my disease (so far, at least), I had a lot of fear. I feared never getting off steroids, I feared dying from an adrenal crisis (thanks to the adrenal insufficiency I developed as a result of long-term prednisone use), I feared never being able to eat foods I enjoyed again, and much more. I still have all those fears, but now that remission has brought me some sense of safety, I have started to process all that has happened to me at the hands of Crohn’s, its complications, and its comorbid conditions, and I am angry.
I am angry that I dedicated myself to healthy habits as a teenager – swimming competitively, gardening, eating vegetables, walking, running – and still got sick with Crohn’s at age 22*. I am angry that I then followed all the advice of my many doctors to a tee, and still had to try multiple biologics and suffer through long-term steroid use before I finally got into remission. I’m angry that I have no idea how long remission will last, and that there are no guarantees.
I’m angry that, throughout my Crohn’s journey, I have picked up an ever-growing collection of other chronic illnesses – fibromyalgia, IBS, depression, an eating disorder, adrenal insufficiency, OCD, PTSD, etc. To be fair, some of these issues existed undiagnosed before Crohn’s disease, but I am angry that my Crohn’s worsened my overall physical and mental health to the point that all of these conditions became severe enough to be blatantly obvious and debilitating.
I am angry about all the endless ways I have adapted my life to fit my illnesses – everything from wearing sunglasses to use my computer, to never being far from a bathroom, to going to bed at 9 p.m., and so much more – only to still live with daily pain. I am angry that my physical limitations and societal ableism have negatively affected my career path, my finances, my relationships, my housing, and more. And don’t even get me started on the anger I have about being immunocompromised in this pandemic.
I am angry that we live in a society that emphasizes individual responsibility for health, and that I have made every responsible choice that I had access to, and I am still sick. I am angry at myself, because “I must be doing something wrong, right?!” and “at least [insert the millions of things I have to be grateful for here].” I am angry at myself for being angry.
My therapist tells me that it makes sense that I’m angry, that I have every right to be angry. I tell him it is hard to be angry when there is no one to blame for my suffering, no one directly responsible for all of this. He tells me to express my anger. I tell him I am furious with my body and want to punish it for all the pain it causes me. He asks me if fighting with my body is helping. I shrug. He tells me we can find other ways to express anger. I tell him I want to yell at him. He says that will be fine. We laugh.
I reach out to my Girls With Guts friends. I tell them I am angry. We are all angry. We have all felt the devastating effects of IBD from a young age. We love each other, and we are angry when IBD hurts the people we love. We send angry text messages, cursing IBD, cursing pain, cursing insurance companies, cursing the pandemic, cursing policies that leave immunocompromised people in the dust, cursing bodies that take so much and give so little.
I attend the weekly mental health treatment group I’m in, and this week we talk about anger. We talk about how, sometimes, anger can be a useful emotion. We talk about how anger can motivate us to advocate for changes, both for ourselves and for others. We talk about how shoving anger under the rug and pretending it doesn’t exist isn’t the same thing as dealing with anger.
I think of how tired I am. I think, at first, that I am tired of my anger. But then I think that maybe what I’m really tired of is pretending that I am not angry. I wonder how much energy it is taking me to pretend that I have accepted the past, present, and future of my illnesses, sickness, and pain.
I think that I will take my therapist up on his offer to yell at him a little during our sessions. I think I will keep talking to my Girls With Guts friends about anger. I think I will try to say, “This pain is absolutely infuriating” the next time someone asks me about my chronic migraine, instead of my usual, “It is what it is.”
I think about what I could use my anger for. I think about all the Girls With Guts I know, who deserve to have their anger heard, validated, and responded to.
I write this blog.
I think it is a start. A start to me allowing my anger to exist. A start to me releasing the anger I keep trying to bury, and turning it into something useful. I think about how our anger connects us. How, as Girls With Guts, acknowledging our anger and using it to fight for more treatments, more inclusion, more accessibility, and more positive change is arguably the most powerful tool we have.
*To be clear: no one deserves the pain and suffering IBD brings, and the exact causes of IBD are unknown. Even if you haven’t engaged in “healthy habits”, you do not deserve to suffer at the hands of IBD and you have a right to be angry about being sick.
Getty image by EyeEm.