Last week I shared a picture of myself on Instagram. Big deal, right? People do that literally every second of every day all around the world. I don’t know about you, but I share selfies when I like my outfit, when something cool happens, when I’m out with friends, or when I’m feeling silly. It’s a way of cataloging and sharing the good parts of my life, putting my best foot forward for the world to see. That’s what made that picture last week a little different. I wasn’t out with friends, I wasn’t happy and I didn’t look cute. I was sitting in a hospital bed, with no make up on, in what felt like the oldest hospital gown still in existence, having not eaten all day, waiting to have a camera put up my butt while I remained in full consciousness. It was a vulnerable moment, it was a challenging moment, it was real moment, and it needed to be shared.
When I became sick with the flare the led to my diagnosis of ulcerative colitis I was 21 years old, in my last semester of college and about to be engaged. My conversations with friends revolved around job fairs, wedding plans, college football games and what I was doing this weekend. I was on the brink of achieving everything I had ever dreamed of, so when I suddenly became sick my reaction was to ignore it and carry on. When I finally called my doctor to make an appointment I was so embarrassed that I locked myself in a room, far away from everyone else in my office so that no one that I worked with would hear me explain to the doctor that I was losing a lot of blood when I went to the bathroom.
I am not a shy person, as is probably evident by the existence of this blog, but in the years following my diagnosis I really struggled with my pride and the embarrassment that came with the nature of my disease. I didn’t want to explain to people that I bled when I pooped, or that it wasn’t something that was going to get better, I didn’t want people to look at me and assume that I had diarrhea all the time, I honestly just didn’t want to talk about it. What this resulted in was a constant feeling of failure and anxiety. I lived in fear that people would judge me, either because I hadn’t met their expectations and they didn’t know I was sick or because they would find out I was sick and either see me as being incapable, or reject me completely. That was an incredibly lonely time for me because even when I finally reached a point where I decided to tell people about my illness they had seen me pretend to be fine for so long that they didn’t know how to react and ended up ignoring the information.
When my husband and I moved to a new city last year I vowed to be completely open and honest with our new friends so that I could try and build a genuine and understanding community for myself. This took a lot of courage for me because I still feared that people would judge me or see me as being incompetent, but I powered through, and was open about my story with anyone who asked. The result has been incredible. Last Sunday, the day before my procedure, I stood in church after the service and one of my friends came up and asked me how I was feeling about the procedure. I told her I was anxious about the information I would get and dreading the discomfort. I didn’t sugar coat it, I didn’t skirt around what was involved, and I let my voice crack as I talked about my anxiety. The next day, I received text messages, voicemails and phone calls from friends who had been thinking about me and praying for me who and who genuinely wanted to see how things had gone. It was the strongest sense of community I have felt in a long time. I didn’t feel isolated in my experience and I wasn’t carrying around the burden of having to “be fine”.
My point is this, your story is your own and it is your right to keep it or share it with whomever you choose, but if keeping your illness a secret is coming from a place of pride and its causing you anxiety or isolation, it may be time to release yourself from the burden of secrecy and be honest with the people around you. Not everyone will respond positively, but you may just find the support and community you need.
Thank you for this post, Samantha~. This is really powerful and important.
I just wanted to say how much I appreciate the hard topics you cover in your blog. This is something I’ve struggled with for a while (not wanting to incur pity, not wanting to tell ppl who I’m sure won’t understand, etc) but I think you’re completely right about how much it helps to have that supportive community. I’m thinking of you and praying as you find out your results and continue on this healing journey.
Thank you for all you do. You are an inspiration! Prayers that your test shows improvement in your health.
Thank you for being so open and brave Samantha. This post comfort so many of those struggling with chronic illness. Wishing you a speedy recovery post-op.
Great post! I just moved to a new state and this gives me some courage to be more vocal about my chronic illness 🙂 Thank you.
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