Now that we've defined Invisible Disabilities, we can move on to a very similar definition - that of Invisible Chronic Illnesses, or ICIs. ICIs are a group of illnesses that share certain characteristics. Not every ICI has all of these characteristics, but most ICIs share most of them:
- Invisible - They can't be seen by a casual observer the way you will notice somebody in a wheelchair, or with a guide dog. All ICIs are invisible.
- Chronic - With most illnesses you get sick, then you get better. With ICIs, this doesn't happen. You might get better, or you might not, and usually there's nobody who can predict what will happen. All ICIs are chronic.
- Non-measurable symptoms - ICI symptoms typically include things like pain and fatigue that a doctor can't measure.
- Difficult to define and to diagnose - Many ICIs, have overlapping symptoms. Others, such as Fibromyalgia, are diagnosed just by excluding anything else that might cause the symptoms.
- No cure - There's no "magic potion" that will cure ICIs. If they were curable conditions, they wouldn't be chronic in the first place.
- Common symptoms - Many of the symptoms that many ICIs share, like fatigue and pain, are things that even healthy people feel a little of. This makes the symptoms easier for the public, and medical people, to trivialize and normalize, "Oh, that's nothing, I get it all the time...".
- Difficult to treat - For most ICIs, there is no one treatment. You may have to "shop around" until you find something that works a little bit for you, or there may not be anything that works. Many treatments for ICIs are still experimental or have not been tested at all.
- Multiple Diseases - Anecdotally, many people with ICIs seem to have more than one of them. For example Fibromyalgia and Multiple Chemical Sensitivities, or Chronic Fatigue Syndrome and Asthma. I don't know if the studies show this is common or it's just an artifact of the type of people who tend to be on the net, but it's definitely noticeable.
All of these things together mean that living with an ICI can be a huge challenge!
So what's the difference between an ICI and an Invisible Disability, or ID? Not a huge lot, really; both forms share many of the characteristics noted above. I think the usual naming conventions put "illness" where there's a pathogen and a fluctuating state involved, and "disability" where it's a steady state. For example a hearing loss would be an invisible disability, whereas Q Fever is an invisible chronic illness. Other conditions, such as Multiple Sclerosis, are commonly referred to under both categories.
Invisible Disabilities and Invisible Chronic Illnesses aren't two big competing entities trying to grab your dollars and attention. They're just two ways of labelling conditions which cause very similar problems, both health-wise and between the person and society. Reading this column will be of benefit to both groups ... so pick whichever label you like, everybody!
