One of the biggest challenges of living with chronic conditions such as chronic pain or illnesses, is getting others to understand the impact these conditions have on our daily lives. With many chronic conditions being invisible illnesses it can be hard for people to accept that while we may look like we are functioning “normally” it actually takes immense amounts of energy for use to participate in things like work, grocery shopping and social events (spoon theory anyone? See my previous post!).

The stigma that arises from certain conditions or the beliefs people hold about living with long-term conditions,can make it really difficult for people with chronic conditions to make and maintain relationships. Combined with experiences of disbelief by the medical community, these misconceptions can play a significant role in the feelings of isolation and other mental health concerns that those with chronic health concerns face.

Common Myths

Anyone living with a chronic condition has most likely come up against some form of ingrained belief, stereotype or negative assumptions by those around them. Unfortunately, society has been made to think about those with chronic conditions and disabilities in a very black and white kind of way rather than a spectrum of experiences.

Talking about and identifying these common myths can help with fighting against the stigma, and help those with chronic conditions understand the “expectations” that are often assumed when people don’t fully understand chronic illness and vice versa. When looking at any social media, forums or support groups for chronic conditions these were the most commonly talked about myths, but the list is by no means exhaustive as everyone’s experience is different.

MYTH: “I get tired too!”

FACT: Fatigue is not the same as being tired. Have you ever had to cancel a date, hangout or event last minute because you were extremely fatigued? Maybe you overdid it the day before when you were feeling good and now you’re in recovery mode. Either way, whenever we comment that we are fatigued or “tired,” especially when we are cancelling on someone, we often face the rebuttal of “I’m tired too!” or “You’re always tired.” These can be really difficult to respond to because unless someone really understands fatigue, they may believe it just means being tired after a night of bad sleep. However, fatigue typically refers to an insatiable tiredness, no matter how much you sleep or rest you face a deep tiredness that impacts your ability to think clearly or function both mentally and physically. Often, the most relatable example for people without chronic conditions to understand the experience of fatigue is if they have ever had illnesses like mono or if they’ve had a particularly long day of physical or mental labour. It is often talked about as a “weight you can’t push off.”

MYTH: Just because I was able to do something yesterday does not mean I can do it today.

FACT: Chronic conditions can be very unpredictable in symptoms and energy levels. Often people with chronic conditions will feel great one day and are able to go to events, work, or exercise but often face extended “recovery time” to compensate for these good days. For example, if I feel great and attend a concert one day, I may be bedridden with fatigue and pain for the next day or two. You may be asking yourself, is that worth it? And for most people with chronic conditions it is, in fact, many of us will take it easy leading up to an event or something we really want to do or attend to make it more likely that we will have the capacity to do it. All this means is that if we saw you at a party last night, but we have to cancel brunch this morning - this doesn’t mean we are making excuses, we just need some time to recoup. In many cases we may be able to do something else with you, like hangout and watch movies on the couch instead of going out! Just be willing to have those conversations.

MYTH: That you must be doing something wrong, have you tired… (exercise/diet/medication/yoga).

FACT: This idea that our chronic pain or illness could be prevented or cured by trying some (obvious) remedy like exercise, diets, and yoga is extremely invalidating to those with chronic conditions. Especially as many of us have spent years fighting for a diagnosis or proper treatment. If I could Yoga my way out of my chronic illness, don’t you think I’d do it? Society tends to make us believe that the problem (whatever it is) is a very individual thing. That we must not have tried everything yet or we would be cured, but that’s again, very black and white thinking and causes serious damage when others endorse that belief instead of taking our word for it - that we’ve tried it all.

MYTH: Just because my illness is not visible does not mean it doesn’t exist.

FACT: If you live with an invisible illness, it can be extremely hard when seeking accommodations or explaining your lived experience to someone and you’re hit with the infamous, “...but you don’t look sick,” or “you look great though!” A vast majority of chronic illnesses, and most causes of chronic pain are in fact not things that you see. Someone could have IBD and an ostomy bag but you aren’t seeing that in everyday life. Chronic back pain is often not something you can tell by looking at someone.

The fact that we need to “prove” ourselves by looking a certain way (what way would that even be?) is one of the biggest frustrations for many living with chronic conditions because it shows up in our daily lives as well as when we are seeking medical support. Most of us have had to adapt to living with certain daily symptoms or pains, we can be functional but not well and that does not eliminate our actual lived experiences

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