This is how I explain my Invisible Illness

This post was updated on 25/02/22

Invisible disability, or hidden disability, is defined as disabilities that are not immediately apparent. Although the disability creates a challenge for the person who has it, the reality of the disability can be difficult for others to recognise or acknowledge. Others may not understand the cause of the problem, if they cannot see evidence of it in a visible way. This can make it tricky for those of us who live with a chronic illness.

My symptoms vary in severity from week to week, day to day or even per hour sometimes. I find that really frustrating when I don’t know how much I can do in a day etc, however I am very aware that someone might look at me, think I look healthy and not understand why I say I can’t drive, make an arrangement or have to leave early. Knowledge is power as they say, so I thought it would be useful to write about how I explain my invisible illness.

What Illness Do I have?

So what is the invisible illness I have, Functional Neurological Disorder? One of the worlds leading authorities on FND is Professor Mark Edwards. The following two paragraphs form part of his explanation on the FND Dimensions website. You can read the full explanation here http://fnddimensions.org/what-is-fnd

FND is a problem with the way the brain is accessing or controlling movement and perception (feeling, thinking). It is therefore different in mechanism from most causes of neurological symptoms which cause damage to the basic “wiring” of the nervous system. Symptoms are caused by a “block” in the normal way in which the body is controlled by the brain and how the brain receives information from the body about sensation.

Treatment is therefore focused on rehabilitation or “relearning” of normal function. This can happen with help from a variety of people including neurologists, neuropsychiatrists, physiotherapists, psychologists, occupational therapists, speech therapists, pain management specialists, fatigue management specialists and others. Most importantly, treatment needs to be individualised to the problems a particular person with FND has: there is not a “one size fits all” treatment.

I give the computer analogy

A computer crashing is something many people can relate to. When I was first diagnosed, I was given an analogy of a brain being like a computer. You can read the full post here, however the main points are:

If the human brain is like a computer, and the software is thoughts, feelings, emotions and behaviour one or a number of the programs /software has crashed-like a computer crashing. So what I had to do was repair that crash by retraining my brain in the way it functions.

I give examples

I give examples of triggers, symptoms and what can help me recover. The more the condition is explained to someone, the more they understand.

My triggers among others are a heightened or sudden change in emotion-positive or negative. A big feature of this, is when I feel overwhelmed. Sometimes if feels like just one more thought pops into my head and it goes “no, too much.” My head and body give up/close down and I fall to the floor. Other symptoms include fatigue, brain fog, dizziness, drop falls, slurred speech and muscle tremors and spasms.

Spoon Theory

Spoon theory is perhaps the best-known creative response to “but you don’t look sick.” Spoon theory originated in a metaphor Christine Miserandino came up with during a conversation she had with a friend trying to explain how she felt. You can read her telling it here,

If you’ve just been diagnosed, I know what that feels like. I’ve been there and I know it is confusing. On the one hand, it is a relief because you have a diagnosis and there is a name for it. However on the other hand, you are given (in most cases) very little support and you might not know where to start. That’s why I started this blog. I want to be able to help you come to terms with and accept your diagnosis, using my own experience.

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