Some of the most difficult chronic illnesses are those that are “invisible” to outsiders. Understanding the difficulties of living with a chronic, invisible illness can be hard for those who haven't experienced these issues.
Whether you have an invisible condition, or love someone who has one, these tips can help you educate people who aren't familiar with them.
To help people understand invisible illnesses, they first need to know what they are. So many people aren't familiar with the most common types of invisible illnesses, which include:
Depression, anxiety, and other mental illnesses
Rheumatoid Arthritis
Lupus (an autoimmune disease where the immune system attacks the body's own tissues and organs)
Multiple Sclerosis
Lyme disease
Digestive disorders like irritable bowel syndrome, Crohn's disease, and others
Cancer
Chronic fatigue syndrome
Fibromyalgia and Chronic Myofascial Pain
Diabetes
There are many, many more examples of invisible illnesses. The first step in advocacy is educating people on the different types of invisible illnesses while emphasizing that just because you can't see pain or discomfort, it doesn't mean they aren't there.
Aside from living with the realities of their chronic illness, sufferers of invisible illnesses have to deal with harsh and insensitive comments throughout their daily lives. If this is your reality, it can make you feel like you need to prove yourself or provide evidence of your suffering.
Hurtful comments can come in a variety of flavors. Molly's Fund (an organization dedicated to informing the public about lupus), has written a list of 10 Things NOT to Say to Someone With An Invisible Illness :
You have what? I've never heard of it.
You need to exercise more.
Aren't you feeling better yet?
Maybe an anti-depressant would help.
“But you look just fine” or “You don't look sick”
You are taking too much medicine.
You need to change your diet.
It's all in your head.
Losing weight might help.
If you just had a more positive attitude.
When you hear someone make a comment along these lines, it can be easy to get upset. If you suffer from an invisible illness, you've probably heard things like this before.
When faced with an insensitive comment it can be tempting to get defensive and angry. Instead, try educating the person by making your situation more relatable.
For example, ask the person if they've ever had the flu, emphasizing how awful it felt. You might even ask them to describe specific feelings to really help them remember. Then, explain that having an invisible illness can feel pretty similar, except your symptoms don't go away after a few days… they're nearly always present.
If you have family members and loved ones who don't quite understand, you should also consider giving them some medical literature to read. You might also invite them to one of your doctor's appointments. Sometimes, hearing about invisible illness from a respected medical professional is what's needed to get someone to put aside their previous beliefs.
The experience of suffering from a chronic illness is physically painful and emotionally exhausting, our counselors are here to help - contact us today!