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7 Things I Wish I Knew When I Received My Ulcerative Colitis Diagnosis

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I was diagnosed with an inflammatory bowel and autoimmune disease called ulcerative colitis in early 2014. There are a lot of reasons people believe colitis flares start, but when they happen, my large intestine and rectum fill with ulcers. Left untreated, these ulcers bleed out, and I simultaneously starve and bleed to death.

At the time of my diagnosis, I was a senior in college. Even though I was literally on the brink of death (not exaggerating here, my hemoglobin level was four), I still did my best to carry on. My bullheaded resolve to remain composed meant I never really processed how alone and terrified I felt. I needed someone in my corner to advise and reassure me, and I didn’t have that. Years later, here’s what I wish someone would have said:

1. It’s not your fault.

Say it ‘til you believe it, and then say it some more.

When I was diagnosed with ulcerative colitis in 2014, someone close to me asserted that because I also had an eating disorder, that I somehow “made myself” get colitis – that all the gluten I had eaten up until that point had caused my body to break down. While I knew it wasn’t true, it still devastated me.

2. You are going to grieve.

Autoimmune diseases force you to re-define “normal” in brutal, unforgiving ways. I didn’t realize I would need to grieve the loss of my old life: the endless energy, the ability to eat whatever I wanted, the blissful lack of medical complications. It was a long process, and one I didn’t realize I would need. But coming to terms with my reality made living and thriving possible. Some things that helped me grieve and heal: going to therapy, confiding in others with long-term health conditions, and reading about my condition and what to expect. I’ve also cried a lot, and even though my tears often feel silly, they help. It’s OK to cry.

3. Caring for yourself will involve a lot of trial and error.

If your experience is anything like mine, there will be a lot of voices telling you what you should and shouldn’t do to care for yourself. As you navigate different options, some will work, some won’t. Give yourself grace as you listen to your body, and remember that everything is new. You don’t get frustrated with a baby for falling as they learn to walk, so be gentle with yourself as you learn how to care for yourself in new ways.

4. Do your research.

You are your first and best advocate. The more you can know about treatment options, whatever route you decide to take, the better. For me that means spending hours reading about special colitis-specific diets, common prescription medications, and natural options. Knowing the tools I have to work with helps me make informed, empowering decisions.

5. Communicate your needs.

This means sharing what’s happening with those close to you so they can show you love and care. For me, this looks like letting my partner know what I need before I’m in a flare, so when it does happen, they’re ready to help. It means saving some energy when I’m not feeling well to communicate how I’m hurting and what I need. And it means finding allies who will advocate for you when you’re not around. Those people who will make sure there’s food at the company picnic that fits your dietary restrictions, or that the hiking trip with friends includes a short trail so you won’t get too fatigued. It makes a world of difference.

6. You don’t owe anyone anything.

Especially not apologies. You do not have to say why you’re sick if you don’t want to. You do not have to eat something that you know will make your symptoms worse. You do not have to apologize for not participating, partaking, or explaining. Your job is to take care of yourself, and if that means not educating other people, that’s fine. If you have the mental, physical, and emotional energy to educate, that’s fine too. But you never owe anyone an education, explanation, or an apology for your condition.

7. It gets better.

I promise. The worst is over. The future is coming. And you are going to make it.

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Thinkstock Image By: KatarzynaBialasiewicz

Originally published: November 1, 2017
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