Posted by Shira Futornick on April 27, 2022
When I was diagnosed with ulcerative colitis at 14 years old, I was shocked. I was lucky enough to already have some familiarity with the disease, but I never thought it would happen to me. I had every single textbook symptom, but I still felt so numb and so distant from the new reality I had to face. This isn’t an uncommon feeling, and it can be really hard to know where to start. IBD is a complex disease, so here are some things I found helpful while learning to navigate those first few months after my diagnosis.
1. Education is everywhere
With a new diagnosis comes a huge learning curve. There are so many resources, especially all over the internet, and it can be overwhelming to know where to start. Two great places to start are: IBD resources shared by ImproveCareNow and the Crohn’s & Colitis Foundation. Along with that, you can sometimes find resources in really unexpected places. There are websites, blogs, podcasts, social media groups, and IBD centers often have resources of their own. It can be overwhelming, but whether you are interested in educating yourself on your new diagnosis or just looking for support, information is out there and you are not alone!
2. Your providers are there for you
Doctors’ appointments with IBD can be really overwhelming. There are often a number of things to address in a limited time and it can feel really awkward or nerve-wracking to talk about some subjects or concerns. Sometimes the provider-patient divide feels so big that it will never improve, but that’s not true! Your providers are there for you and they genuinely want you to feel better. If you are dealing with concerns related to your IBD, don’t be afraid to speak up. Talking about bathroom trips and sharing aspects of your life in such great detail is uncomfortable sometimes, and it’s okay to feel like that. Keep in mind that not only do they hear these things all day, every day, but that it’s their job to support you, not judge you. If you are not being treated the way you expect, it is absolutely okay to speak up or seek a second opinion.
3. You deserve grace as you move through this process
My diagnosis came with a lot of heavy emotions, and it’s okay if yours does too. It’s normal to feel a lot of different things, from relief to anger to confusion. As helpful as it can be to educate yourself, sometimes it’s even more helpful to take a step back. You don’t have to sort through everything all at once. It’s totally okay to take a break from all the research or to be bitter about your situation. I found that the more I fought the anger and the negative emotions, the more they consumed me. Sometimes you just have to let it all out. The same goes for feeling relief and hope. It can feel wrong to be happy about being diagnosed with something like IBD, but it’s an answer, and it means you finally know why you’re having the symptoms you’re having. Whatever your feelings are, they are valid. There is no handbook for dealing with something like IBD. Remember that no matter what, you aren’t crazy.
4. You are your own best advocate
A strong support system can make a really big difference in an IBD journey, but at the end of the day, you are your own biggest supporter and your best advocate. If you read about a treatment you think is interesting, bring it up. If you have a concern that you don’t think has been addressed, push to have a conversation about it. You know you and your body best and you have the potential to influence the direction your treatment goes.
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Get #InTheLOOP with more stories by Shira on the ICN blog >>
Put in your time and energy on behalf of someone else. No effort is too small, because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers, and together we bring about a better quality of life for many. Here are some actions you can take, or invite others to take:
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Invite someone to stay #InTheLOOP with IBD stories on the ICN blog - "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint
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Invite a patient (14+) to join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea
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Invite a parent or family member of a child with IBD to join the Parent/Family Advisory Council - "I was astounded by the instant bond established with parents I had never met. Every conversation provided me with strength. It ignited another purpose in my life." - Maria
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Invite someone to download free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint
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Invite someone to Join Our CIRCLE - "Resources we found in CIRCLE eNews do not just focus on physical health, but also on critical areas like social-emotional needs, nutrition, back-to-school planning and mindfulness. These are valuable tools for my son to remain healthy." - Lisa
