The experience of living with a chronic illness doesn’t just effect the patient, but also their parents, spouses, friends, family, caregivers and children. Everyone is trying to figure it all out and wanna help. And for the most part, the patient is grateful for the support. But with the everyday pressures, pain and surprises of living with a chronic illness, certain things you say can only add more stress. Here are a few examples of aggravating things an IBD patient just doesn’t wanna here.
Top Five Things You Should Never Say To An IBD Patient
5. I don’t think you should/I don’t think you can eat that.
Food is such a personal and sensitive thing for each patient. I have friends with UC that get TORN up for gluten and dairy products. Dairy products made me sick, but not gluten products. I cannot eat too many salads, but I know people that can’t eat salads at all. I also know that more than 7 kale chips will make ME, personally, nauseous. Not everyone with a Jpouch has that reaction. So, I say all this to say that the patient knows what they can eat and when. And sometimes the patient may be willing to deal with the consequences the next day for a taste of something they want. That’s their prerogative. Don’t embarrass them by asking out loud in front of a bunch of people if they can eat that.
4. Be Positive
Chronic pain can bring depression. It can range from mild to severe. It cannot be helped and it can’t be predicted. But aside from that, sometimes you just get frustrated with the pain, limitations, body deforming, and injustice of it all. And that is okay. It’s okay and natural for someone to have a bad day! It’s very hard to hear someone with all their organs, able bodied and has gone most of their adult life without pain or challenges tell you to get over it and be positive and grateful. You see we are grateful. You know it could be worse or you could be dead. But sometimes when you are feeling perfectly fine but suddenly find yourself pooping on yourself in your car while trying to drive your kid to school, you find yourself being a little frustrated.
3. I Get Bad Stomach Aches Too
Having a chronic painful autoimmune disease like Crohn’s or Ulcerative Colitis is more than just a bad tummy ache. Not only does it effect your digestive system, but joints, eyes, teeth, taste buds, hair follicles, skin, memory, sleep and moods. It can also open up your system to other autoimmune diseases such as another form of IBD (if you have Ulcerative Colitis, you could develop Crohn’s), Fibromyalgia, Arthritis, Lupus, Cluster Migraines and more. And as far as your tummy goes, imagine feeling like you’re being stabbed by hot rod iron spikes fresh from the flame that also brings needle scraping in your back and nausea. I would hope that you don’t get the same stomach pains I get.
2. But You Were Fine Yesterday or You Just Did_____, Why Can’t You Do _______ now?
The most annoying part about having a chronic autoimmune disease is you NEVER know when it’s gonna strike and how long it will last. And while you are in pain in one area you try to utilize other parts that don’t hurt so bad. You are also making constant decisions about what is worth it. Was it worth it to take your son to the beach yesterday and putting off the grocery store today? Perhaps…maybe you know you won’t get the chance to spend that kind of time with your kid for a while. The groceries can get delivered or you can just put it off one day.
1. Didn’t You Just Go To The Bathroom?
No matter how outspoken someone is about their IBD, they still don’t like to answer or feel like they have to advertise when they go to the bathroom. Especially if it’s back to back. Not only do IBD patients HATE going to the bathroom because it is sooooo painful, but also, sometimes it can be a bit embarrassing and take a while.
Now while your intentions are good, just know that having something like a chronic disease can leave you very vulnerable and sensitive. And basically, you just don’t want to more attention brought to your disease than necessary when you are trying to live a normal life. I decided to post this because, sometimes it can be hard to express yourself without getting moody, sensitive and angry when someone says one of these things. I hope this helps some folks out! xoxo