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Photo by Noorulabdeen Ahmad on UnsplashA group of people put their hands together to form two hearts.

Photo by Noorulabdeen Ahmad on Unsplash

A group of people put their hands together to form two hearts.

In the three plus years since my Crohn’s diagnosis, I have felt increasingly depressed and withdrawn, moving further into a place of profound Aloneness. I moved to a new city after graduating college, and was diagnosed with Crohn’s shortly after. Since then, I have also been diagnosed with OCD and PTSD, battled severe adrenal issues from steroids, tried and failed many Crohn’s treatments, and struggled through graduate school. I have grappled with my sexual orientation, have confronted the homophobic shame I have internalized, and have slowly learned to be more comfortable with my queer identity. I have fought off the suicidal thoughts–my unwanted companions for over a decade now–that Crohn’s has only intensified. I have had hundreds of medical appointments (literally hundreds), and have spent time in both intensive outpatient and inpatient mental health treatment.

At some point along the way, I came to the conclusion that it would be better off for everyone involved if I just kept to myself. Sure, I share health updates on my private social media page, and I give people watered-down versions of the truth about my mental health. But generally, I have kept the pain and despair bottled tightly, only uncorked when I am safely alone. Isolating yourself can be effective in containing some of your problems until it inevitably leads to more and more pain and you realize that your survival is contingent on connecting with other people.

Around the time that I realized I needed more support in my life, I started connecting more with fellow Girls with Guts. It was not exactly a conscious effort at first. A fellow Girl with Guts volunteer said “message me if you ever want to chat,” and so I did one day, figuring that we would have a few brief chats until she inevitably got caught up in her own life and realized that the intense mess I am floundering in is too much to hear about and politely wander off. I have never been so happy to be so wrong in my life.

Fast forward a few months and that fellow Girl with Guts and I still chat almost daily, and we are now in a group chat with four other wonderfully amazing Girls with Guts. We are in three different time zones, so one of us is generally always awake, ready to share in a laugh or bear witness to a heartbreak. A few examples of common topics of conversation: “Places I’ve Vomited,” “Times I have Pooped Myself,” “Navigating Life-Threatening IBD Complications,” “Navigating Losing Loved Ones, ”“Weird Stuff My Body is Doing Today,” “Navigating Sex and Relationships with IBD,” “Awful Medical Providers Who Shouldn’t Be Allowed Near Patients,” “Laughing Hysterically at Truly Horrendous Medical Stuff That Isn’t Really Funny, but We are Laughing because That’s What I Need Right Now”, and “Dreaming Up a Chronic Illness Land Where We All Go to Be Together.”

Image by Duong Huru on Unsplash Two people hold hands.

Image by Duong Huru on Unsplash

Two people hold hands.

When you are in the throes of life with Crohn’s, depression, PTSD, and OCD all at once, being able to send messages like, “OMG I didn’t make it to the bathroom in time last night, and then I dropped my phone in the cat box in my rush, LOL” or “I’m feeling hopeless because my body feels like the scene of medical trauma instead of my home, and I don’t know how to feel safe in here anymore,” to people who understand and relate makes all the difference in the world.

In addition to love, understanding, and connection, these friendships have given me hope, hope for a life outside of Aloneness. I always assumed that getting diagnosed with IBD would make me feel like even more of a social outcast. Oddly, the opposite has been true: my IBD has connected me with people who accept me, relate to me, and teach me that I am capable of (and even sometimes good at!) connecting deeply with other humans.

Of course, I’m not going to suddenly become an extroverted social butterfly. But, I have been working to open myself up a bit more in all my relationships. Rather than always hiding my emotions and pretending things are fine when they are not, I’m working on letting others in a bit and being more honest. Rather than assuming my painful struggles will only burden others, I’m asking myself “What if sharing my pain brings richness to this person’s life? What if my openness frees them to be open, too? What if our connection could bring joy to both of us?”

The peer support specialist I work with told me recently that he likes to think of positive human connection as the opposite of mental health crises. Connecting with fellow Girls with Guts has taught me that connection is an opposite to a lot of things: an opposite to despair, an opposite to depression, an opposite to giving up on yourself and your life in the face of IBD.

IBD has made me give up a lot of things. I’ve given up popcorn, I’ve given up plans for careers that are incompatible with IBD and immunosuppression, I’ve given up friendships with people that can’t accept my disease or my reaction to it, and I’ve given up what my life would have been if I had never gotten sick. But, recently, I have opened myself to what I’m gaining from the IBD community. I’m gaining a richness to my life I never knew possible; I’m gaining an appreciation for things I never even thought twice about before; I’m gaining understanding. And I’m gaining connection. Connection with all of you Girls with Guts, and connection with the people I am opening myself up to after being reminded that I am worthy and capable of love and friendship.

• About The Author
Lizzie was diagnosed with Crohn's disease at age 22 in April 2018, and feels fortunate to have found support and an outlet for her writing at Girls with Guts. Lizzie also lives with OCD, depression, and chronic pain, and is a member of the Queer/LGBTQ+ community. Much of her writing explores the interaction between her IBD and her other illnesses and identities. Lizzie is grateful for the acceptance she has found at Girls with Guts. In her free time, Lizzie enjoys taking walks in the rain, listening to audiobooks, photographing flowers, and spoiling her precious cat, Linus.
Laughing as I Fall: Using Humor to Cope with the Scary, Tragic, and Embarrassing Moments with IBD The Real Cost of IBD

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  1. Stacey D says:

    Lizzie,

    Thank you so much for this article!! I was diagnosed in September of 2018. In March of 2018, my hair started falling out in handfuls. Thinking it was just due to my exercise regimen, I ignored it. On June 18, I doubled over in pain. The ER said it was just gas. Two weeks later, I was incredibly sick, while on vacation, and ended up back in the ER. This time, the ER doc said that I needed to get back to Texas and see a GI because it looked like I had Crohn’s. My first GI took 2 months to finally diagnose me with Severe Small Bowel Crohn’s and put me on a 7 month course of Prednisone that ultimately damaged my liver and added 70 lbs. I went from healthy eating and doing 2 5Ks a month to being overweight, exhausted, and sad. Sad over how I looked and sad over a life that was never going to be the same. After failing Remicade and Entyvio – both due to anaphylactic reactions – I began see an amazing Crohn’s specialist, who changed me to Stelara. My Crohn’s is now in remission, and we are just adjusting the frequency of the shots to maintain symptom control. We’ve traced my medical history, ER visits, etc. and believe that I’ve had Crohn’s since I was 17 – misdiagnosed for 27 years. She also has referred me to a rheumatologist to deal with my back, hip, and joint pain and a liver specialist to deal with my liver. I find out in July if I have to have a liver biopsy to test for autoimmune hepatitis – thanks Prednisone. Crohn’s is the ultimate version of that carnival game “Whack-A-Mole”. Just when you get something fixed, something else pops up. My husband helps me to laugh and see the humor in things that others might not find funny. Our 3 cats seem to know when it’s a rough day and refuse to leave my side.

    It has also showed me who my true friends are. Those friends that will cover your class when you have to dash to the restroom or are in too much pain to teach. I’ve had some friends that encouraged me to talk about my Crohn’s struggles, only to turn around and tell me that I talk too much about it. I won’t get into the isolation and loneliness I know we all felt during Covid – quarantining due to being immunosuppressed. I am a huge extrovert, so the past year hasn’t been easy.

    I apologize for this long comment. I guess your story hit home with me, and it made me want to share. I just want to tell you that you’re not alone in your struggles and that it’s really nice to know that someone else has felt the same feelings that I have felt.

    I wish you all the best on your journey. I’m truly happy that you are discovering new and exciting things about yourself. You deserve all the amazing and wonderful things that this world has to offer.

    Thanks again!
    Stacey

  2. Lizzie says:

    @Stacey thank you so much for sharing your story. I’m so glad the blog resonated with you, and it’s so hard when you are going through so much awful medical stuff. I’m so frustrated for you that you were undiagnosed for so long, and I’m glad that you have found true friends to give you the care and love you deserve. Crohn’s is medical whack-a-mole for sure, except I always joke that it feels like the moles are whacking me! Thank you for you powerful comment and I too am wishing you all the best things the world has to offer. Hope to see you around the GWG forum sometime and take care ????
    -Lizzie

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