6 Terminology Differences That Matter When It Comes to Chronic Illness
When talking with someone coping with chronic illness, you might find yourself trying to relate to their experiences. You’re probably coming from a kind and caring place and looking to sympathize, but you may not realize that when you say things like “Oh I know just how you feel! I was so exhausted after work the other day!” or “I was so sick with the flu last week. It’s taken me forever to recover!” you make it obvious that you are far from truly understanding.
It’s not really your fault, though. Not being able to fathom living every single day feeling like your body has been filled with sand, sludge, razors, and concrete is actually quite a normal thing and a blessing! However, in the spirit of education, I want to bring to light a few subtle terminology differences that are actually huge differences when it comes to chronic illness.
1. Tired vs. Fatigued
At first glance these two words may seem interchangeable. Synonyms really. But ask anyone who has struggled with myalgic encephalomyelitis, or chronic fatigue syndrome, and they’ll tell you fatigue is a completely different beast than run-of-the-mill tiredness. When I was tired as a healthy person, I would grab a caffeinated drink and push myself through the day until I could curl up in bed and snooze for the night and then wake up feeling much better in the morning. I could still get done what I needed to do during the day and while it may not have been much fun, being tired wasn’t debilitating.
When you struggle with fatigue, everything is a mountain. No matter how much you sleep the night before you always wake up completely exhausted. Walking into the kitchen from the living room just a few feet away can leave your muscles burning and aching as though you’ve just ran a competitive sprint. You plan a strategy for everything to minimize the physical activity you need to do to meet your needs. You may find yourself thinking, “I really want to change the radio station but I have to put on my turn signal in a minute so I’ll just wait so that I only have to raise my arm once.” Fatigue, unlike tiredness, can be debilitating. To most, these differences aren’t very important but to your chronically ill friends, they are massively contrasting words.
2. Chronically Ill vs. Sick
These two are a bit more obvious in their differences. As a healthy person, when I caught the occasional cold or virus, I would rest and drink lots of fluids. People would say phrases like “feel better soon!” and I would reply with a thank you and be assured that within a few days I would be back to normal and go on about my life. The aches, nausea, and congestion that come with temporary sicknesses are certainly no fun at all but you know the symptoms will eventually pass.
When you have a chronic illness, phrases like “get well soon” or “are you better yet?” can be really difficult to respond to. The thing is, you don’t recover from a chronic illness. The best you can hope for is to manage it well and live life around it. There will be good days and bad days but there is likely no cure. No amount of chicken broth is going to heal things like autoimmune disease or genetic abnormalities. I can’t sleep away the headache that has been my constant companion for four years. Its hard to communicate that truth without sounding negative but it is a fact. Instead of responding to a chronically ill friend in the same way you would a friend fighting the sniffles, try asking something like “How are you doing today?”
3. Addicted vs. Dependent
I’m sure that this may not be the opinion of everyone with chronic conditions, but for me, this is a very important comparison. There is a mentality surrounding pain management that seems to say that someone who needs long-term pain medication is addicted. While yes, our bodies will experience withdraw symptoms after suddenly stopping a medication, being addicted to a “high” is very different than being dependent on the medication to function. Those taking painkillers for chronic pain often explain that they do not experience the euphoric sensation, the medications just allow the person to be able to live their life a little more normally and in a little less agony.
4. Acute Pain vs. Chronic Pain
Growing up I had my fair share of injuries and accidents. I remember the pain of a stress fracture or the pain of breaking a finger or having wisdom teeth excised. Recovering from my wisdom teeth being removed was not fun at all. I remember being so swollen and sick and laying on the couch for about a week and trying to eat soft foods. I babied the pain knowing it would eventually resolve and I would go back to life as usual.
With chronic pain, however, there is no expiration date. You can’t give all of your attention to the pain all the time because that would quite literally leave you with no life at all. So you learn to do things in spite of hurting. You might get really good at plastering on a smile each morning on the good days and on the bad days you just do the best you can. Plans may become much more fluid because the pain can flare at any moment and land you in bed when you had planned on having lunch with a friend. The never-ending struggle is not at all the same as twisting an ankle and being sore for a while. It’s very difficult and usually brings friends like anxiety and depression. Please don’t ever say to someone with chronic pain that you know just what they’re going through because you broke your arm.
5. Treatment vs. Cure
Many sicknesses are curable and have an established treatment plan. You have an infection, get some antibiotics, and get better. With chronic illnesses though, there is no cure. Many people believe that after one has a surgery to address something wrong in their bodies, they should be cured. The surgeon fixed the problem, right? Wrong. There are treatments that can greatly improve quality of life for those with chronic conditions but if they were cures, the condition would not be “chronic.”
When I had a neurostimulator implanted for my new daily persistent headache, many were expecting me to be just like my pre-sickness self. Unfortunately, that isn’t how it works and while the device does help, it is far from a cure. There are still days that I have to stay in a dark and quiet room and just hope to make it through the day. Battling the flu isn’t the same as living with gastroparesis. Having a headache isn’t the same as living with chronic migraine.
6. Headache vs Migraine
There is a huge misconception that migraine is just a really bad headache. This is not the case at all. According to the Merriam-Webster definition, a headache describes an ache or pain in the head. In contrast, migraine is described as a complex neurological condition with symptoms that include severe headache but is not limited to just the head pain. Many people with migraine would tell you that an attack is accompanied by symptoms all over the body which can include light/sound/smell sensitivities, nausea and vomiting, difficulty speaking, vision disturbances, weakness or paralysis of limbs, and so much more. The headache you experience after a night of heavy drinking is not at all the same thing as a migraine attack.
These are just a few of the terminology mix-ups that can make a huge difference in communication with those living with chronic illnesses. Hopefully this list will provide some insight to just what it means when your friend has to cancel yet again due to a migraine or needs to take a nap midday despite having slept 14 hours the night before. Are there other subtle differences that make a huge impact on your life? I’d love to hear about them!
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo by Design Pics