Health and wellness touch everyone’s life differently. This is one person’s story.
I’m a 23-year-old student from central Illinois. I grew up in a small town and led a perfectly ordinary life. But shortly after I turned 17, I was diagnosed with an inflammatory bowel disease (IBD).
It changed my life forever. I went from being a normal, healthy teenager to being in the hospital for 37 days and nights straight.
It’s been seven years — and 16 surgeries — since my diagnosis. And since last November, I’ve lived with a permanent ostomy bag on my stomach. It’s been an adjustment over the years, and I’m still learning. But it wasn’t just me that had to adjust.
You see, there are only two types of illness that society equips us to handle: those that don’t take very long to get over (such as a cold or the flu) and those which are fatal (such as advanced forms of cancer). Society doesn’t really prepare us to handle lifelong illnesses or disabilities. Nor do we really learn how to support those who have one.
All of us have fallen ill before. We all know how to take care of a loved one when they get something like the flu. This ability to offer support in a way that lets them know that you’ve felt their pain and can relate is called empathy. In order to empathize with someone, you have to have a deep-rooted understanding of what’s happening to them, because you’ve experienced it yourself.
But how do you comfort and support someone when their illness is debilitating in the long term, and you can’t relate?
Many people around me have had a difficult time adjusting to my health situation (often just as much as I have). Everyone copes differently and tries to help in their own way. But when no one around you can understand what you’re going through, even their best intentions can be more harmful than helpful. To fix this, we need to create an open dialogue.
Here are a few tips to help guide you in supporting a loved one with a lifelong, debilitating illness.
1. DO have an open mind and believe them when they’re confiding in you about their pain.
Many people feel isolated (especially with illnesses that aren’t visible) when others don’t believe that something is wrong. Sure, we may look just fine. But our diseases are internal. Just because you can’t see them doesn’t mean they aren’t there.
2. DON’T assume you know how they feel or offer advice unless you’re absolutely sure that you’ve shared their experience.
With my disease, it’s not uncommon that someone will ask about what’s going on with me. When I try to explain to them that I have IBD, I’ve been interrupted several times with comments like, “Oh! I totally understand. I have IBS.” While I understand that they’re only trying to relate to me and establish a connection, it feels a bit insulting. These conditions are wildly different, and that needs to be recognized.
3. DO ask directly what you can do for them instead of automatically assuming you know how to help.
Any sort of help offered is always appreciated. But because there are so many different diseases and variations of those diseases, everyone has a unique experience. Instead of looking at outside sources for ideas, ask your loved one what they need. Chances are that what they need is different from what you’ve read online.
4. DON’T use trite expressions like, ‘It could always be worse’ or ‘At least you don’t have ________.’
Statements like these are typically made with good intentions, but they can really just make your loved one feel more alone. Sure, it could always be worse. But imagining someone else’s pain doesn’t make their pain any better.
5. DO apologize if you think you may have crossed a line.
When I first became sick, my face was overly swollen from steroids. My immune system was extremely suppressed, so I wasn’t allowed out much. But I convinced my mother to let me pick up my brother from school.
While waiting for him, I saw a friend of mine. I broke the rules and got out of the car to hug her. Then I noticed she was laughing. “Look at your chipmunk cheeks! So this is what you’d look like if you were fat!” she said. I got back in my car and was bawling. She thought she was being funny, but she had broken me.
Had she apologized as soon as she noticed my tears, I would’ve forgiven her right then and there. But she walked away laughing. I’ll remember that moment for the rest of my life. Our friendship was never the same. Your words have a bigger impact than you know.
6. DO take a little time to research the illness.
As someone with a chronic illness, I find it cathartic to talk about it. But that isn’t so easy when you’re venting to someone who has no idea what you’re talking about. When I was talking with a friend about how I was feeling and he mentioned “biologics,” I knew I was talking to someone who was really trying to understand.
If you do a little research on your own about the condition, you’ll have some knowledge about it the next time you ask them how they’re doing. Your loved one will feel more understood. It’s a thoughtful gesture that shows you care.
7. And above all else, DON’T give up on your loved one.
It can be frustrating when your friend constantly has to cancel plans or needs a ride to the emergency room. It’s mentally draining when they’re depressed and you can barely get them out of bed. They may even be absent for a little while (I’m guilty of this myself). But that doesn’t mean they don’t care about you. No matter what, don’t give up on your loved one.
No matter how you try to help your chronically ill loved one, the effort alone is appreciated. I can’t speak for all of us with a chronic illness, but I know that just about everyone I’ve come across has had good intentions — even if what they said did more harm than help. We’ve all put our foot in our mouth on occasion, but what matters is how we handle the situation moving forward.
The best thing you can do for your sick loved one is to be there for them and do your best to understand. It isn’t going to cure their illness, but it will make it much more bearable for them to know that they have someone in their corner.
Liesl Peters is the author of The Spoonie Diaries and has been living with ulcerative colitis since she was 17 years old. Follow her journey on Instagram.