I was diagnosed with inflammatory bowel disease (IBD) at 17 years old. Initially, dealing with my diagnosis was somewhat of a relief. I’d been suffering from symptoms for so long prior to my diagnosis, I was just happy to (finally) have an explanation for what was going on in my body.
As a 17-year-old child, my life would change drastically. I was going through things I never imagined as a teenager. None of my friends were on steroids. None of my friends were gaining weight as fast as I was. None of my friends were tiring out after a few hours of school.
After a few months of medications and follow-up appointments, it wasn’t too long before I couldn’t recognize the person I saw in the mirror. From the outside looking in, I’m sure people talked. After all, I was in high school. I needed so many things at that time, but I didn’t know how to voice those needs. Instead of trying to explain my diagnosis and my needs resulting from it, I chose to hide my condition and pretend everything was fine.
This is actually more common than you may think. Some people are too ashamed or embarrassed to share their IDB diagnosis, especially with the widely spread misconception of it being a “pooping” or “bathroom disease.”
How to support friends, family through an IBD diagnosis
- Allow them to vent. When I was diagnosed with IBD, I think what I needed most was to share what was on my mind. Just having time to speak and share my innermost thoughts on my condition, and how it affected my life, would have been so helpful. It probably would have helped me to adjust much faster to my new lifestyle after being diagnosed.
- Don’t give medical advice. We have enough doctors; we need more friends and support.
- Spread positivity. After being diagnosed, there were days I would get so depressed. So tired of being different. So tired of taking medications. So tired from living a life I didn’t sign up for. These are the times when I needed a positive voice, and someone to remind me there is still life to be lived after being diagnosed.
- Remember, despite how well someone may look from the outside, they could be suffering on the inside. You don’t have to “look sick” to be sick. IBD is known as an invisible illness because symptoms and complications may not always be visible from the outside. However, the damage is still being done regardless of physical appearance.
- Keep the lines of communication open. Of course, just as every person is different, so is every patient. No two people diagnosed with IBD have the same wants and needs. Let the person know they are loved and supported. Let them feel it with everything you do. If you want to know their biggest need, just ask them. Keep open communication so the person feels comfortable confiding in you.
Thanks for reading. If you have anything to add to my list please leave it in the comments below.
Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.