It’s been just over a year since my ulcerative colitis diagnosis and so much has changed for me, and about me, since then.
I’ve been through so many medications. I’ve spent a lot of time cooped up at home and come to appreciate every day that I get to spend outside of it. I’ve learned that I’m lucky to have the support system I do and, I’ve learned how easy it is for people to look right through me. I’ve learned a lot about myself, and my body, and how I feel about both, and those lessons are the ones I want to share with you today, May 19th, World Inflammatory Bowel Disease Awareness Day.
Inflammatory bowel disease is an umbrella term for disorders that involve chronic inflammation of the digestive tract. Common symptoms include diarrhea, abdominal pain, fatigue, and weight loss but each person with IBD experiences it a little differently from every other. There can be joint pain, eye, skin, and liver inflammation, severe bleeding, increased cancer risk, and more.
Two types of IBD are Crohn’s disease and ulcerative colitis. The two differ in that Crohn’s can develop anywhere in the digestive tract from the mouth to the anus, whereas ulcerative colitis is confined to the colon or large intestines. In addition, Crohn’s can affect all layers of the bowel wall, while ulcerative colitis only impacts the innermost layer of the colon.
I caution people against comparing the severity of the two diseases. A person with Crohn’s may only experience mild symptoms and may be able to easily control their condition with medication while a person with ulcerative colitis may live in debilitating pain and experience a host of complications for years while trying every available avenue until surgery is required to remove the colon entirely.
Neither of these conditions should be confused with Irritable Bowel Syndrome or IBS, a common digestive disorder that causes abdominal pain and changes in bowel movements but doesn’t cause lasting damage to the digestive system.
Not a lot is known about the cause of inflammatory bowel disease, and there is no known cure, only remission achieved through trying a series maintenance drugs that come with their own risk of side effects until something works. You take that drug or combination of drugs until they stop working, and then you try a different combination all the while toughing out the side effects doctors have little sympathy for.
And as if the disease wasn’t bad enough, and the meds weren’t even worse, there is something even harder to explain, to see, and to cope with, something no one talks about. It’s something hard to put into words and something far harder for someone who can’t feel it to empathize with. The emotional pain and the loss of self, that is what I wish the rest of the world were a little more aware of. How badly I miss who I used to be and how hard it has been for me to love who I have become, both body and soul.
Even the best gastroenterologist, unless they suffer from this disease themselves, can’t understand the shame and the sadness that comes with missing out on life because you have to stay close to the bathroom and the bed. They never tell you how well you will get to know your body, how much time you will spend alone with it, and how little you will recognize it as a part of you.
When I first met with my gastroenterologist 8 weeks after diagnosis, I was already emotionally and mentally a shell of myself. I felt disconnected from my body. I was my mind, my body was something I was chained to, a diseased and weak thing I was forced to drag around. I hated my body. It had betrayed me. It had failed me, and after all, I had done for it, how dare this meat bag put me through so much. I went from being a happy, friendly, and curious person to being angry, sullen, and withdrawn in a matter of months.
I didn’t mean to lose myself so quickly, but your world kind of turns upside down when your body and mind become at odds with one another. It’s a jarring experience, especially for the young. You look at your self in the mirror you are disgusted by what you know is a defective physical manifestation of who you are you. You wash yourself in the shower and can’t bring yourself to look down. You do what must be done by your body, no more no less, no love and nothing extra. You separate from yourself and this disconnect, though natural and completely understandable, negatively impacts your quality of life.
What I want my fellow IBD warriors to know is that defective body you have come to hate is trying so hard to get well and what it needs from you is what you need from the rest of the world. Your body needs support, understanding, time to rest, to heal, to be the best it can be. Your body isn’t the problem. The problem is the world your body has been forced to navigate which leaves no space for bodies in pain and never slows for bodies who need more time.
It’s taken me a long time to realize that my body, me, I, am trying very hard to heal but some parts are just broken. Parts are missing, or maybe there are too many parts. The instructions to function are deleted, scrambled, corrupted, and irretrievable, but my body is trying. I am trying.
I know now that my body hasn’t failed me. I failed myself when I failed to see myself as a whole entity. I failed when I rejected myself. I failed when I dragged myself around like spoiled meat. When I refused to see myself or to love myself. When I failed to be understanding and tender. My body is strong, and it deserves love from me at the very least.
I’m still suffering. I’m still in pain, and I’m still frustrated. I’m still stressed out and I’m still very worried about what the future will bring, but I know none of that is my fault. It isn’t my bodies fault. It isn’t anyone’s fault!
Instead, I point my rage where it belongs. I’m frustrated that it takes so long to move from one treatment plan to another. I’m frustrated by the red tape and the sky-high price tags on medication I need to live my life. I’m frustrated that so many other IBD suffered I’ve spoken too have so little information and doctors who don’t return a phone call or explain where they should go from here. I’m frustrated by people who dangle false hopes of a cure and by the suffering spread by loved ones with no patience, compassion, or understanding.
I’m frustrated by an economic system that won’t let you take time off of work to give your body the rest it needs. I’m frustrated by a society that teaches us that self-care is selfish, that stress is normal, that invisible illnesses don’t exist. I’m frustrated by businesses that close their bathrooms to the public. I’m frustrated by the lack of accommodations everywhere you go. I’m frustrated that the world doesn’t see me, all of me.
I’m frustrated that it’s so hard for me to see me too.
But I’m trying, and I think we should all try a little harder to see ourselves, but especially those of us dealing with IBD, and anyone with a chronic illness. You have to make peace with your body the way it is now. You have to work with it, compromise with it, embrace it, encourage it, and love it. You have to take to be able to look in the mirror and register what you see as you. You have to be able to touch your own skin and connect with yourself.
All bodies will find their limits eventually, and those limits will constrict with time for us all. I want you to know, fellow IBD and chronic illness sufferer, that your capacity for self-awareness, self-acceptance, and self-love will far outpace the average human because you have had to find that truth sooner.
Today, I just want you to know I see you and I know what you are going through. I know it’s hard. I want you to know that I am proud of you and that every part of you is beautiful and good just the way it is.
Let’s make sure the whole world knows it too.
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