IBD and Invisibility
By Devin - Gali Community Member
Invisible.
When you think of the word “invisible,” you may think of a superhero, and I’m more than okay with being called one. See, in my eyes, I am my own superhero (or rather, my body is). I kick my own ass, use up energy (my kryptonite) to make myself weak, and fight like hell to save the world from IBD.
But let’s circle back to that word, “invisible,” because it stands for so much more. I suffer from Crohn’s, and like many, deal with invisibility: emotionally, physically, and literally.
I volunteer for a camp for kids with Crohn’s and colitis and in our training, they talk a lot about “invisible backpacks.” This is a metaphor for all of the emotional trauma a child may pack and bring with them to camp. Newsflash: this doesn’t just pertain to children. As adults with IBD, we often stuff that invisible backpack to the brim with stress, frustration, sadness, anxiety, depression and trauma of our own.
These emotional traumas spill over into everyday life: work, school, relationships, etc. and usually peak their ugly heads out at the worst of times. A few months back, I was in a particularly rough place with a flare. My state of depression was so bad, I had body paralysis. No literally, I was paralyzed; I couldn’t move. I hadn’t slept the night before and it was 7:00am, I was supposed to be at a work appointment and my body would not budge from its spot. My manager reached out to ask me if I was okay, and 30-ish minutes later, I finally responded with a lie, saying I was throwing up. I figured telling him THAT was more believable than telling him my body shut down from emotional trauma and I couldn’t walk into the other room to work.
Most of us talk about IBD being invisible. It’s not something the eye can usually see on our bodies, and we deal with our symptoms alone – usually, on a toilet, in bed, etc. No one sees the pain and agony we go through on a daily basis. No one sees the blood in our stool, the abdominal cramping, the accidents during sleep, the joint pain that makes it impossible to move. All they see is a “lazy person” who can’t get out of bed.
Earlier this year, my diagnosis changed from ulcerative colitis to Crohn’s. I was in an awful flare for the better part of a year before the doctor realized what was happening and could put me on medication. I was bed ridden, began working from home, couldn’t walk down the stairs and gained 30 pounds. My parents, God knows I love them, thought I was being lazy. I heard a lot of “if you just got out of bed and went for a walk,” and “you should try yoga.” It’s like they thought I WANTED to be in that position, never mind that I felt like every bone in my body was exploding. Though symptoms of IBD are not normally visible, they are there. They are PAINFULLY there, and trust me, we are not faking them.
I have been in and out of hospitals since I was diagnosed 10 years ago. For a lot of family and friends, it has become very normal to see me in a hospital bed. I’ve become less fun, too sick to go out and friends stop inviting me. Almost INVISIBLE, really. I recently spent four days in the hospital for a bowel obstruction. I’ve had upwards of 40 obstructions, so obviously, this isn’t new. I spoke with a family member on the way to the hospital, who of course, gave me the “if you need anything, let me know because I’m close by” speech. I did not receive one phone call or text message after that to check in.
Three days after I was discharged, I found out that the same family member was in town. I had to reach out to make plans, it was almost as if my invisibility had increased. We planned to meet at my grandparents’ to visit after they went to a winery (which I was not invited to, and trust me, I let that awkward pause go on for a LONG time, waiting for the invite). I showered and got ready, which is hard for me to do normally (because, spoons), never mind that I had just gotten out of the hospital, and waited to hear from them. I’m sure you know where this is going and yes, I could have reached out too, but wasn’t I the one who deserved a TINY bit of effort? I found that they visited my grandparents without me.
People with IBD become an afterthought, much like IBD itself. The disease is “unglamorous” and not popular, likely due to the havoc it wreaks on ones body, and the embarrassment it brings to patients. I have been judged and gawked at for the depression and anxiety that consumes my body. I’ve heard the gossip about taking leave of absence from work because “I don’t look sick.” I’ve been called a less than suitable wife because my husband CHOSE me and continues to choose me every day, without fail.
I put a smile on my face most days, just to try to feel like I’m not the “sick girl.” Crohn’s isn’t something I wanted or asked for, and it’s not something I wish on my worst enemy. I wish that the people who knew I’ve been suffering silently would make me feel less invisible. I wish they’d SEE me. See my heart, my pain, my good days AND bad, and love me through it. And not just when it’s convenient for them.
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