I get this question often from both friends and family, which is a good thing! It is nice to know that they, who maybe do not quite understand the entirety of my disease, want to contribute in any way they can to make me feel better. The Crohn’s and Colitis Foundation posed this question last week on their social media pages, and it struck a chord with me. Support from outsiders is something I have yet to write about and is probably one of the most important aspects of living with a chronic illness.
On the Crohn’s and Colitis Foundation’s LinkedIn page, a few people shared what they think is the best way to support someone with IBD. The common themes seemed to be “understanding,” “listening,” and “being present.” I can agree with all three of these. Being diagnosed with a chronic illness is a shock, not only to the patient, but to family, friends and caregivers. Surrounding yourself with people who do not cause you more panic is essential. All we want is for someone to understand that we may not be able to perform the same activities that healthy people do. Sometime we need to rest instead of going to that party, and that is okay. Often, we find ourselves feeling guilty for always saying “no” to things, but at the end of the day, maintaining health is more important to us than a party.
Somebody else mentioned on the LinkedIn post that removing the “label” of being a sick person can help fight off emotions like defeat, anger and guilt. We do not want to be labeled as “sick” or “disabled.” We are still normal people trying to live normal lives, just with a small caveat. Our disease does not define us, as often times patients with IBD also identify as parents, siblings, grandparents, spouses, etc. We have goals to pursue and lives to live just like you!
On the Crohn’s and Colitis Foundation’s Instagram page, someone mentioned not comparing their UC diagnosis to someone else with Crohn’s or UC. Every “body” is different and experiences this disease in different ways. There is no one solution that will cure us. It is a multitude of factors that contribute to symptomatic remission. Another good response I saw is not suggesting ways to fix or cure us. This is what a doctor is for and now we know that there is no end-all, be-all solution.
It is important not to push someone to talk about their disease if they do not want to or do not feel comfortable doing so. I personally love when my friends and family ask me questions because it shows me they care and genuinely want to learn more. I choose to be open about my disease, but many other IBD patients do not, so please remain respectful. I am a big advocate of asking questions because that is really the only way someone will understand me and see things from my perspective. We absolutely do not want to hear “You don’t look sick,” or “Just get acupuncture.” It is so much more complex than this. We cannot control this disease or predict how we are going to feel tomorrow. Unconditional love and patience is key as a supporter of someone with IBD.
Another way friends and family can get involved is to donate to the Crohn’s and Colitis Foundation to help find a cure for IBD. Last year, I did a birthday fundraiser for the Foundation and I was blown away by how willing my friends, family and even strangers were to donate their money to a great cause. If I was not so open about my disease, I am not sure I would have gotten this great of a response. If you want to support me on my chronic illness journey, feel free to donate to the Foundation or ask me questions!
How do you prefer others support you? What is your biggest pet peeve?