9 Things You Shouldn’t Say to Someone With a Chronic Illness

It’s no surprise that sometimes people say things they don’t want to–or mean to. Especially when they’re talking to someone with a disease like scleroderma, that is not fully understood by those who don’t live with it.

To help you learn more about what you shouldn’t say to chronically ill people, we’ve put together this list of nine things you should never say (source: healthline.com):

Sometimes people who live with chronic illnesses that have very few external signs are not believed. If people can’t see your disease, they often don’t think you have a disease–and that’s just not true. Scleroderma has several symptoms that are just internal and are most of the time invisible for those who don’t know them.

So no, it’s not just in your head and you’re not overreacting. Your chronic illness may be an invisible one, but it’s just as real as any other health condition.

 Learn more about living with a chronic illness.

Again, just because you don’t see the disease, doesn’t mean it’s not there. How you’re feeling may not be visible, but that doesn’t mean you don’t feel extremely tired, that you don’t end up exhausted by climbing a few stairs, or that you don’t feel sick to your stomach. Even a fever can be “invisible.”

It’s totally normal to suffer from symptoms that stop you from doing what other people do, even though they may not show.

Here are some scleroderma-related conditions you should look out for according to the Scleroderma Foundation.

Pity is something that may come with comments from people who are completely unaware of what your disease actually is. The unknown is something that could be extremely dangerous–and scary. When people are trying to be nice and trying to empathize with you, they can express pity as a way to try and connect with you. Most of the time, people around you don’t know how to address your health condition and simply don’t know what to say. Let’s be honest: you’d rather hear something like, “I’m here for you” or “You can count on me” as opposed to people saying they’re sorry, right?

Here are seven tips to help manage your fatigue.

Sometimes people just want to be nice, so they might say things that seem fine in their heads but it doesn’t come out as they thought. If you have a chronic illness, it means you will have to live with that disease for the rest of your life. Sure, you will have ups and downs and some moments will be better than others, and at some point you will feel better, but the disease will always be with you.

Even though they might want to show you support, saying that things will get better is not fair. Living with a chronic illness is like being on a roller coaster all the time; you can’t predict what’s going to happen next.

According to the Scleroderma Foundation, while there is no proven cure for scleroderma, much can be done to prevent, minimize or alleviate its effects and symptoms. 

At the moment, we live in a culture full of crazy ideas of physical perfection. Sometimes society wants us to believe that everyone should have the perfect body: slender with just the right amount of muscle. So it’s understandable that, if you lose weight, people may compliment you–and that would be fine, if the reason you lost weight was not a health issue.

Here’s another story from a chronic illness patient: Wyatt Wright (a.k.a Wyatt The Warrior),  a nine-year-old young boy diagnosed with localized scleroderma (linear) at the age of eight.

Everyone has an opinion, and everyone knows someone who is friends with someone that has a certain disease because they did something or took something. Well, it’s not quite like that. It just might happen that some people, who are unfamiliar with your health condition, may think that you developed your illness because of something you did.

Though it’s true that there are certain risk factors associated with pretty much all health conditions, that does not mean that you played any role in developing it.

 Learn more about how to live with a chronic illness.

In an attempt to relate to you, people may compare themselves to you. It’s normal for people to think they can relate to something they don’t quite imagine how hard it actually is.

Looking for more facts? Here are 10 autoimmune facts and statistics.

Everyone has an opinion and everyone knows someone who is friends with someone that has a certain disease–and that might be true. But not everyone is the same, and the exact same health condition can affect different people in very different ways. So while that friend of a friend may suffer from scleroderma and has some very bad days, that does not mean you will go through the exact same thing that he/she is going through.

A healthy diet does not cure scleroderma, but nutrition is essential for patients’ overall health.

Every health condition is a serious health condition. People tend to tell you that things could be worse, that you could have a more serious disease, but no one knows what you’re going through. Having a chronic illness means that you have to deal with it for the rest of your life.

Here are some yoga moves that might help you manage scleroderma symptoms.

Scleroderma News 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.