Ask-the-Advocate: Piece of Advice for IBD Caregiver
Inflammatory bowel diseases, such as Crohn's disease and ulcerative colitis, can affect the whole family, including friends. It can be difficult from both perspectives - caregivers can often be frustrated because they want to help but don't know how, and patients can get frustrated because as much as they try, loved ones just don't understand what it's like to have IBD. Managing this relationship can be tough, but it's worth it.
So we asked our advocates:
What's one piece of advice you'd share with an IBD caregiver?
Read their thoughts and be sure to share yours as well!
Response from Sara
Caring for someone with a chronic illness is very challenging. The disease doesn't just affect the patient, but everyone close to the patient. You may be tempted to “fix” everything, offer advice about how your loved one should or should not treat their disease, and so on. Most of the time the best thing to do is listen and ask questions. Most patients are not looking for advice on what to do or what “cure” you have heard about. That can actually be quite offensive even though your intentions are good. Usually patients just want to be heard and validated.
You may also become unintentionally overbearing and protective of the patient (especially if you are the parent) which can make your loved one feel like you think they can't do things anymore when they are struggling to maintain any independence they can in their lives. It's best to ask the person living with chronic illness how you can help and what things work or don't work.
Response from Marisa
One piece of advice I would give to new caregivers is to make sure your loved one is seeing the best of the best, if possible. Going to an IBD center or an IBD GI specialist will be your best bet. Ask questions and don’t just do what a doctor thinks if it doesn’t feel right in your heart. Listen and believe your loved one... Even if something isn’t showing up on images or lab work. But mostly, just be there. Be a listening, non-judgmental ear who isn’t always trying to fix things. Venting is important and having someone we trust is vital to our quality of life.
Response from Amber
Be patient with us. I know we aren't always easy to live with. We are still trying to figure this out, too. But together, if we learn how to navigate this, and keep open, honest communication, things will be easier on both sides. We must allow each other to vent when we need to without taking offense. Easier said than done.
Response from Courtney
One piece of advice that I would give to new caregivers for patients that live with IBD would be to just be there for us 110%, especially when we're at our worst. Our moods can be all over the place, our pain levels can be scary, and the way we feel about our disease and life can vary from day to day, but having people surrounding us who love us (no matter what) and who can remind us of our strengths when we're feeling weak is super important. Having a solid circle of people who can support us on this journey with IBD and who won't run away when things get really scary, hard, or uncomfortable is a crucial part of us being able to live well with these diseases. We need to know that those who choose to be around us can handle the obstacles that may come with our illnesses and will also be there to celebrate the triumphs that we will have as well
Response from Krystal
This is going to be a Sh*ty ride. Its not going to be fun for anyone. You're going to feel useless but just loving, being there and supporting will go along way.
How about you? What's one thing you'd like to tell the loved ones of an IBDer?
Will you help us understand the impact of Crohn's & colitis by taking the IBD In America Survey (US only)?