I’ll never forget the day I was told I have ulcerative colitis. Suddenly, I had both an answer and a thousand new questions. There are a lot of emotions that come with a diagnosis of an incurable chronic illness. On one hand, there’s relief for finally getting an answer to what was happening to my body. On the other hand, there’s fear for what that means moving forward.
In those first weeks, I remember wishing someone would just tell me what to expect. Not necessarily in medical terms, but from lived experience. Over time, through time, experience, and a lot of self-advocacy, I’ve learned a few things that I happily share with anyone newly diagnosed.
- Always advocate for yourself and your needs.
Don’t wait to call your doctor if things seem off. Ask questions until you understand your options. Be brave about telling people you trust what kind of help makes things easier. No one knows your body better than you. So trust your instincts and stand up for what you need.
- Understand that every UC journey is individual.
There is no one-size-fits-all approach to Inflammatory Bowel Diseases like ulcerative colitis. No two people will experience the same pattern of symptoms, treatments, triggers, or path. Just because someone’s symptoms resolved quickly doesn’t mean yours will. Just because someone needed an ostomy doesn’t mean you will.
Early on in my diagnosis, I found a lot of support in online communities. It was very comforting, but it also meant wading through a lot of the “snake oil” remedies. My advice is to listen closely to your body, take careful notes on symptoms, diet, and stress, and check any new ideas or remedies with your care team before trying them. By combining your personal observations with professional guidance, you can make informed decisions and manage UC in a way that works best for you.
- Find and maintain effective medical care early on.
Get connected with the right medical team early, even if it takes time to find them. It’s perfectly okay to “shop around” for a doctor who really fits your needs. Navigating healthcare in the U.S. can be exhausting, but you deserve a provider who helps you feel heard and cared for.
Maybe this advice seems a bit obvious when reading it. But it really will come up throughout the ulcerative colitis journey a lot. So, it makes me grateful to share it! When I was diagnosed I struggled to find others to connect with. Now, every time someone says, “hey my friend was just diagnosed with ulcerative colitis. Can I connect you?” it makes me so happy to be that person I once needed.
