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Ask the Advocates: Invisible Illness & Relationships Part 2

Ask the Advocates: Invisible Illness & Relationships Part 1

Living with an invisible illness can be frustrating. Often, if people can’t see your symptoms, they can’t appreciate your experiences and your pain.

This month, we asked our advocates, “As you manage your IBD, how do you feel that your family, friends, and/or acquaintances can better support you?”

Check out their responses:

Jaime Weinstein

ImageOne of the things I struggle with is knowing when to say “No” to others and to myself. I wish my friends, family, and those who are around me often could better spot the tells I give when my energy tank is running on “E,” when my anxiety is rising, or that when I start to stare off into space I’m not daydreaming and it’s most likely GI discomfort or joint pain taking my attention away from them. If those closest to me could recognize when I need to stop, my quality of life would probably greatly improve because I stink at it. Thankfully, my fiancé has gotten pretty good at spotting some of the tells and has forced me to stop and rest.

Jenna Farmer

ImageI’m already pretty lucky. But I suppose I wish they’d understand a little more about how it makes me feel at times. Sometimes I’m just so frustrated and I don’t want someone to tell me to think of people who have it worse. I’d just like them to nod and say ‘I know it’s tough’ and then move on.

Marisa Lauren Troy

ImageI find comfort in being around loved ones who support me by believing me first and foremost. I don’t want to have to prove anything to anyone. I just want those around me to trust me regardless of how I appear on the outside. It is only then that I feel like I actually want to be around other people, instead of isolating myself.

Kelly Crabb

ImageFeeling micromanaged or getting unsolicited advice can make a loved one feel worse when dealing with an illness they may have minimal control over if any. Be with them physically if they want you to. Offer to come over and watch their kids, take their dogs for a walk or call them when you’re at the grocery store and ask if there is anything you can pick up for them. Those small things amount to really, really great and meaningful things we acknowledge as support.

Paul Richmond

ImageI have a great support system. You have to. You can’t fight IBD alone. If I need something, I can always turn to my family or friends to help me. If I could pick something that can better support me, it would be where they pick vacations. Traveling for an IBD patient is very tough. I do not like to travel outside the country. Water treatment plants are different in other parts of the world, and I don’t want to go to a place where I would get sick from the water. Also since my immune system is very low, I am afraid of getting sick in another country. The hospital treatment might not be as suitable as here in the states. I am going abroad a few times in the near future, and I wish we could go somewhere else. On my end, I can’t always think of myself and have to learn to go with people’s requests and learn to work through it. It is a work in progress!

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.

Read Part 2: Ask the Advocates: Invisible Illness & Relationships Part 2

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