Having an invisible illness is quite difficult to deal with when you feel like no one understands what you’re going through. It’s especially difficult when you don’t fully understand your condition yourself, for instance, not knowing what exactly triggers your symptoms. Nonetheless, it is still crucial for IBS patients to have a support system that keeps them motivated and positive through the tough times, the flare ups, the doctors’ appointments, or any other needs a patient may have. Ironically though, some of the tough times actually involve building and maintaining one’s support system.
I remember when I first told some of my family members what I was dealing with, some were understanding, but there were others who just weren’t. Some relatives (and friends) just couldn’t fathom how my bathroom issues could be so debilitating, so I decided to find another way to break it down to them. Here are a just a few tips of my own that helped me communicate with my family:
- Be open about your condition
If you want people to understand what you deal with on a daily basis, then you have to be open about your condition. IBS can be an embarrassing topic to talk about sometimes, but you have to put your insecurities aside and open up. For instance, I have a cousin, who at first, knew nothing about IBS until he heard I was suffering from it. As soon as I explained that almost everything I eat causes me pain no matter what, and that the only way to relieve some of the pain is by having a bowel movement (but that may not always work due to constipation), he actually understood and was sympathetic towards me. It felt good knowing I had his support, and by opening up to him, it gave me the courage to be open to others as well.
- Be creative in your expression
If you feel your friends and family aren’t fully understanding of your IBS, then you might want to try to be creative in how you express yourself. For instance, I decided to create a YouTube channel (Positive vIBS) to help raise and spread awareness about IBS. I would express myself by performing my own poetry about IBS, and by also doing reenactments of situations I went through with my family when I tried to explain my IBS problems to them. I also created content about how I try to function in life with IBS by giving tips and putting a positive spin on it. When my family finally saw some of my videos, not only were they surprised at how creative I was, but also surprised that they didn’t know how serious my condition was and how it affected my life. So, in my experience, being creative helped some of my friends and family truly comprehend my condition.
- Don’t force them to understand
We have to be honest with ourselves, some of our friends and family just won’t understand what we deal with. There could be many reasons as to why, maybe they lack understanding of invisible illnesses or they’re just going through something themselves where they don’t have the capacity to worry about someone else. However, whatever you do, don’t force anyone to understand your situation. Instead, stick to those who do understand and surround yourself with those people. For instance, if some of your relatives don’t understand but you have friends who do (or vice versa), then seek support from those who are willing to give it to you. They will be the ones who will help get you out of your misery.
These are just a few tips that have helped me communicate with my family and close friends. I feel that being open about what you deal with not only makes it real to you, but it also makes it real to the people around you. And if being open isn’t enough, then being creative in your expression or explanation might be the spark in people’s brains to help them begin to understand. Most of all, I don’t want to FORCE people to understand me, instead I would rather surround myself around those who are WILLING to understand and support me. Through using these “tactics”, I feel more comfortable than ever before talking about what I deal with on a daily basis, and do not have to feel ashamed about it. For the first time, I can finally just be me.