Living with Inflammatory Bowel Disease (IBD) is like running a marathon you never signed up for. It’s exhausting, unpredictable, and—let’s be real—pretty lonely at times. When I was first diagnosed, I had no clue how I could handle everything on my own. I figured if I just followed my treatment plan, adjusted my diet, and kept pushing forward, I’d be okay. But I quickly realised that managing IBD isn’t just about treating physical symptoms—it’s about building the right support system to lift you up on the hard days.
The Emotional Lifeline: Family and Friends
For me, having people in my corner makes IBD just a little less overwhelming. I’ll be honest: talking about my symptoms with friends wasn’t easy at first. I mean, how do you casually explain the fatigue, pain, and endless trips to the bathroom without feeling like you’re oversharing? But once I started opening up to those closest to me, I found that they wanted to help. For me it's not all smooth sailing, I was a lot more open to begin with and now since my surgery I am awful at socialising and messaging, I am that one person with 250 unopened texts. So, it's definitely a roller-coaster, but I know there are people who will understand that and will be there for me if I need them and vice versa. Finding that group of people who will get the weeks of silence, makes the guilt disappear!
If you’re nervous about sharing your journey, take baby steps. Start with one trusted person and let the conversation flow naturally. I promise, you’ll feel lighter once you let someone in.
My family has been my rock through it all—the good days, the flare-ups, and the uncertain moments in between. From the countless doctor appointments to late nights when I needed someone to lean on, they’ve been there without hesitation. IBD can be isolating, but having my family by my side reminds me that I’m never alone in this journey. They celebrate my victories, no matter how small, and hold me steady when the road feels rough. Their belief in me strengthens my own belief in myself, and for that, I’m endlessly grateful.
Finding “Your People” Who Truly Get It
No matter how much your loved ones care, there’s something uniquely comforting about connecting with people who truly understand what living with IBD feels like. For me, that meant diving into online communities and local support groups. Suddenly, my symptoms felt normal and wasn’t “weird” or “too much”—I was surrounded by people who had walked the same path.
One of the biggest game-changers for me was hearing their tips and stories. I learned how they coped with bad days, handled awkward social situations, or even dealt with doctors who didn’t always take their symptoms seriously. These connections weren’t just practical—they were empowering.
The one thing I did learn the hard way was that often the only people who look for help on support groups are in a lot of pain and so tend to be pretty pessimistic, it can be helpful but also can be harmful, so remember just because all you see is horror stories on forums, that does not mean that is your future, all the people in remission or coping well are living their lives, not on Facebook.
If you haven’t explored support groups yet, give them a try. Even if you’re not ready to share, just listening to others can be healing.
The Magic of Meeting People in Person
Meeting someone face-to-face who shares your journey is a powerful experience. For me, it took 4 years before I met someone with IBD that wasn't in a hospital that was my age. I’d never had a conversation with someone who fully understood the challenges of living with IBD. Until I went to a Crohn's and Colitis UK Event in the House of Commons. I met Nish, Scarlett, and Princess. For the first time, I wasn’t the only person in the room worrying about medication side effects or planning my day flare ups. These were people who had walked the same path, faced the same struggles, and—most importantly—knew how to find humor and hope in the journey. That day, I realized the true power of finding your community. that moment, I felt seen in a way I hadn’t before.
In-person support groups and events give you a chance to build those kinds of connections. There’s something special about sitting across from someone who nods knowingly as you describe your symptoms or laughs with you about the awkward realities of life with IBD. It’s not just about sharing advice—it’s about feeling less alone.
If you’ve never attended an in-person group, I encourage you to take the leap. Whether it’s a local meet-up, a charity event, or even a conference, you might just find your own Nish, Scarlett, and Princess.
The Role of Healthcare Teams
Let’s talk about doctors for a minute. Finding the right gastroenterologist felt like speed dating for me. Some didn’t really listen, while others overwhelmed me with too much information. But when I finally found a doctor who not only explained things clearly but also genuinely cared about my mental health, everything changed - sadly that is a permanent doctor for me, it was my surgeon who I don't get to see anymore. But that did show me how LOW my standards of care from doctors had gotten.
Your healthcare team should feel like an extension of your support system. And don’t hesitate to advocate for yourself—whether that’s asking for a second opinion or pushing for a referral to a dietitian or therapist who specialises in chronic illness.
A Support System That Grows With You
Over time, I’ve learned that a support system isn’t static—it evolves. At first, I leaned heavily on my family. Later, I found strength in the IBD community. And as I became more comfortable managing my symptoms, I started advocating for myself and finding confidence in my own abilities.
Everyone’s journey is different, but one thing is universal: you don’t have to face this alone. Whether it’s a text from a friend, advice from a fellow warrior, or a thoughtful check-in from your doctor, support can come in many forms.
Living with IBD is a marathon, but with the right people by your side, every mile feels a little more manageable. You’ve got this—and you’re never alone in the journey.
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