The Impact IBD Can Have on Friends and Family - Part 1
Having any kind of chronic illness, like Crohn’s Disease or ulcerative colitis, can greatly impact friendships and relationships. When once strong relationships go south because of things surrounding your disease, it can, and often is, very upsetting. It can cause depression, isolation, anger issues, withdrawal, feeling hopeless, worthless, anxiety, among other things.
Lack of control and predictability is one of the most difficult things about IBD, in my opinion. It is so hard to be looking forward to something and then randomly, your disease decides to act up, and you have to miss out. If there was a reason for things that I could potentially control, I think I would be able to handle my inflammatory bowel disease better. Or rather, I don’t think it would sideline me emotionally if there was something I could do to help ensure I stay as healthy as possible. I always just wanted to be told “if you just stopped doing X,Y,Z” and/or “started this, that and the other thing” you won’t even notice you have a disease. Or, the impact on your day to day life will be minimal.
Having suffered from ulcerative colitis since I was a young teenager, I definitely struggled with the lack of control in my life. As a competitive swimmer, I would work so hard in swim practice, do extra dryland practices, spend time in the weight room, finally get back to where I was prior to my last flare up/surgery, and be all ready for an exciting event with my teammates and BAM. I was having problems. My teammates understood but people were still moving on without me. They were able to be consistent in practice and also develop close bonds with each other that someone like myself, who was so in and out, couldn’t possibly do to the same degree.
I had an amazing group of friends from kindergarten through 9th grade before I switched schools my sophmore year. I was lucky that even though I had to miss things, I was so close with these people that no one “forgot about me” and I was always welcome to attend anything if I was up for it. They also got me two stuffed animals that they knew I had wanted since I was 9 years old. To this day, I still sleep with one of them (the other is bigger than me :) )
When I went to another high school, I met and befriended people fairly quickly. However, these were people that had been friends since elementary school so trying to fit into their “group” was even harder when I couldn’t be present the way I would have been had I not been going through so much. I had to stop going to school halfway through my junior year of high school (and repeat the year) because I was too sick to continue. I was even down to two afternoon classes at that point since I also had a drain (from abscesses) along with a picc line that I needed to keep in for nine months. I still couldn’t hack it and ended up having more surgery soon after.
This meant starting my junior year with an entirely different group of people. Again.
For me, this cycle continued through college. I went to the first semester of my freshman year of college ( I had to stay close to home because of IBD which I didn’t want to do but made peace with it) but then needed surgery the second semester. Then, I returned a semester behind, completed half of it despite not feeling my best but looking forward towards the end goal, only to need emergency surgery in the middle of the semester, wiping the slate clean. All my hard work for nothing. And also, the friendships I had made were impacted because I was still so hell bent on keeping my IBD as much of a secret as possible.
I could continue on with examples, but I think you get the gist and I know so many of you reading this can relate to some of these frustrations with school, athletics and/or work.
Working so hard and pushing yourself so much to achieve the things you want more than anything, and have it be hindered by physical problems that are completely out of your control, is so frustrating!
You are NOT ALONE if you are sick and tired of working so hard only to have to be knocked down and start all over. So many people get it and are in your shoes. Trust me.
It is hard to maintain close friendships/relationships with a disease like Crohn’s Disease and ulcerative colitis. It is often times difficult for me to even respond to something as simple as a text message when I am in pain and feeling badly. I also always made excuses as to why I couldn’t do certain things which I am sure lead people to believe I was blowing them off. When it happens a couple times, it is understandable, but when it continues to happen day in and day out for months or even years, even I would be skeptical if that person wanted to hang out with me :)
I don’t fault anyone for taking those signs to mean that a person doesn’t want to spend time with you, talk to you via text or on the phone, catch up in some way, etc. I do know that the more we can explain to our friends that us going MIA has no reflection on them, the less miscommunication there would be.
Maybe saying something: It is simply how we process. I always love getting “thinking of you” or “always here for you” texts when a friend knew I wasn’t doing well. Even just emojis to show that I was in someone’s thoughts lifted my spirits. When I have a friend who I know is going through a rough patch for whatever reason, I always text saying how much I am thinking about them and that they don’t have to respond if they can’t. I try to do that every few days (depending on who the person is, obviously) because I want them to know that the world may be moving on without them, but at least someone is thinking about them and offering any kind of support they can.
For example, I was recently in the hospital and once a couple of my friends found out, they reached out and it really lifted my spirits. I know some people don’t like to bother someone during a difficult time but even something like emojis can bring a smile and make a person feel less alone.
Please be sure to look out for Part 2 where I acknowledge and discuss some of the difficulties of having a friend or loved one with a chronic illness...
What type of IBD have you been diagnosed with?