Ask the Advocates: Invisible Illness & Relationships Part 2

This month for Invisible Illness Awareness Week, we asked our Inflammatoryboweldisease.net advocates, “As you manage your IBD, how do you feel that your family, friends, and/or acquaintances can better support you?”

Read Part 1: Ask the Advocates: Invisible Illness & Relationships Part 1

Natalie Hayden

ImageOftentimes, I feel my friends and family don’t bring up my battle with Crohn’s. I’m more surprised when people show an interest and ask me questions. I can’t quite put my finger on it. I’m not sure if they think it’s a sensitive subject or something awkward to bring up, or if they don’t really care. It can be disheartening at times. If someone asks me how I’m feeling or goes above and beyond to check in when I’m flaring or in the hospital, I always remember the act of kindness. A simple ‘how are you feeling’ goes a LONG way.

Brooke Abbott

ImageI think that people are quick to want to help, to solve the problem. Living with IBD is not a solvable problem, it’s just a way of life. I don’t think that the help with diets and suggestions, mentions of me needing to rest every five seconds, is out of malice. But it can create more anxiety. Especially if I’ve chosen that day to completely ignore my body working against me and just push through. Someone reminding me of my fragility and disability can be frustrating. I think perhaps listening to the patient and trusting that the patient wants to be well as much as you want them to be well. Trust the patient. That would be amazing!

Amanda Osowski

ImageI am so grateful and lucky that I first became friends with my husband only a few years into my health struggles. I was finally diagnosed with IBD while we were dating long distance, and have been hospitalized several times during our relationship. He has always been by my side, supporting and advocating me with every turn. Before I knew him, I relied mostly on my family, who did try their best to support me. They hated seeing me struggle, but they also didn’t have as much knowledge of disease or tenacity to really help me feel heard by medical staff or listened to in general. This taught me very quickly that the ways in which I advocate for myself will always be of the utmost importance.

Currently, in my life, my Crohn’s is well controlled (thank goodness) on a biologic, and I am currently undergoing IVF to hopefully become pregnant. My family and friends all know that the time window in which I conceive is incredibly important based on my IBD. One thing that would be helpful, or that they could do to better support me (especially my family) would be to be more understanding when I cancel plans or turn down invitations. It’s so important for me to not get run down physically or mentally in order to keep my health in line, and I can’t risk a flare or anything happening at this point in our infertility treatments.

Share your experiences

How has living with an invisible illness affected your daily life? What do you wish others knew? Share with us in the comments or by submitting your own story.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

Poll