IBD, Perianal Crohn’s Disease, Abscess, Fistula complications, Sepsis, Crohn’s Arthritis, Pyoderma Gangrenous, DVT, blood clotting disorder, low blood pressure, Tachycardia and an irregular heartbeat with palpitations, Migraines, Body Dysmorphia, Depression, Anxiety, Agoraphobia, PTSD, hair loss, insomnia, self-isol
No, you didn’t just read a list of side effects from a newly FDA approved medicine. What you did read are just some of the things I have to battle with and continue to overcome daily. It’s unfortunate, but I can continue on with that list for quite a while. Being diagnosed with a chronic illness at 27 is utterly perplexing, as I am sure it is at any age. You live this life and you have your plans, goals, aspirations, and, at the flip of a switch, that all changes. I was completely blindsided and continue to be with every new diagnosis.
Finding my “new normal”
Once I was diagnosed, I would hear from other IBD patients and medical professionals about the importance of finding your “new normal”; a phrase I found to be so true and necessary, as I myself was discovering what that would mean for me. My struggle came into play when I realized no one around me seemed all that open about the process that preceded this new life I would be creating for myself. With the daily challenges associated with chronic illness, figuring out how this new life looks can feel as if you’re driving at night in a rainstorm, with your headlights off, just praying you’re on the right side of the road.
I had never really been exposed to the chronic illness lifestyle. Even though it has now been 2 years, the chronic part is still something I struggle with regularly. It’s easy to forget that this illness is for life. It definitely doesn’t help when the “able” ask you if you’re better yet. Especially, when after every procedure, that thought passes through your own mind, only to disappoint you again because you know that “better” will never be a permanent option.
I was beyond lost at the beginning of my chronic illness journey. I was scared and I felt alone. I was the only one in my world who could speak my language and everyone was staring at me like I was a circus clown. As if the chronic pain wasn’t enough, I was now facing emotional turmoil as friends, who I considered family, began to drop out of my life. I was left to fend for myself the same instant everything I knew changed; with only a few true friends remaining by my side to help navigate the most difficult challenges I’ve ever faced. True colors began to shine in moments of crisis and I was seeing rainbows.
Highly medicated and awkwardly positioned in my hospital bed, I felt as if I was being tested. I can only describe my time in my post-op, shared-room as a character-building experience. I squinted one eye shut to combat the drug-induced, kaleidoscope vision so I could begin to research how to achieve this “new normal”.
Finding support
I stumbled across the Crohn’s and Colitis Foundation and sent them an email. Once discharged from the hospital and successfully escaping the grips of my home nurse, I managed to make it out to a few events. I started meeting people, people like me, only they were more informed and experienced with their place in their chronic illness journey. It was through these gatherings that I became connected with my mentor, who now is my closest and dearest friend.
We began going to support groups together and she got me to see a psychologist who specialized in IBD. I had a connection with my mentor-turned-best-friend that I’ve never experienced before. I wasn’t aware that relationships like that were real. I finally wasn’t alone on my planet where no one could figure out what I was saying. I was the least lonely I had ever been, and we were in our very own world where we finished each oth
It was through our relationship and her perpetual support that she encouraged me to stop hiding behind my fears and do what I love. Out of this came The Lemon Blog, my passion project. The Lemon Blog is a place that supports all abilities and provides encouragement, mentorship, community, advice, an ear to listen, or even a shoulder to cry on when needed.
I cannot stress enough the importance of having a solid support system. Sadly, not everyone has that available to them, which is why The Lemon Blog has become so important to me. Not only have I made amazing connections with these warriors, but we check on each other regularly, we cheer each other on, offer support when needed, words of encouragement when down, and have some pretty good laughs along the way.
People like Meena at The Unchargables help pave the way for the rest of us and I am honored to be writing this for their site. Thank you for asking me to share my story. I encourage everyone to share their own; you never know who it may help. I’d love to see you over at thelemonblog.com or shoot me a direct message through our Instagram @the.lemon.blog – we’d love to have you be a part of our Spoonie Community and help you to discover you own New Normal.
About the Author:
Marie is a chronic illness warrior who runs The Lemon Blog, which is her passion project. Marie created this blog with the aim of supporting fellow chronic warriors and helping them find their own “new normal”.
