Many people were shocked the first time they saw me after my MS diagnosis and made comments like "you look so well." They expected me to look different or be less able-bodied due to my diagnosis. In actual fact, I look completely the same.
Of course, I’m grateful that I don't visibly look ill. But just because I’m 21 and 'look healthy', it doesn’t mean that everything is great and my life is perfect.
Explaining the reality of MS
It’s a real challenge trying to get people to understand MS, because it’s such as complicated illness.
For one, most people don't even know what MS is, and that’s the first hurdle. Almost every time I tell someone that I have MS, they look shocked but then proceed to ask "what actually is MS?"
The fact is, MS presents itself in completely different ways depending on the person. And my own MS hides itself well.
Balance, brain fog and fatigue
So how does MS affect me?
Sometimes I struggle walking in a straight line or sometimes I walk into things or I trip on air due to ongoing balance and coordination problems. But to other people I just look clumsy or even drunk.
Forgetting things or not being able to remember things well is also frustrating. This is something that has changed a lot for me over the past year. Brain fog, or cog fog as some people call it, is an actual thing and it is SO annoying.
It's hard to understand how MS affects a person unless you actually have it. For example when I tell people I’m tired, this is because my MS causes me to suffer from chronic fatigue, not because I didn't get enough sleep. Or when I tell people I can't remember something, it's not just because I have a bad memory. Cognitive impairment is something completely different.
Because we look healthy on the outside, one of the greatest challenges we have is explaining to others how a person who looks so well can actually feel ill or be in pain
Living life as a spoonie
The term 'spoonie' relates to all people who suffer with a chronic illness. Essentially it's an analogy of daily life. A person has a handful of spoons every day - sometimes they will have more, sometimes they will have less, but they represent that person’s daily energy reserves. Every activity, no matter how thoughtless and automatic, depletes from this energy supply.
Getting out of bed, showering, getting dressed, eating, and any number of mundane tasks threaten to deplete energy at any given time. Some days are better than others but sometimes you run out of 'spoons'.
When you run out, you can choose to borrow spoons from a future date - but there are consequences. When you deplete your spoons/energy, you may be bedridden and unable to manage the simple activities of daily life.
Never judge a book by its cover
Because we look healthy on the outside, one of the greatest challenges we have is explaining to others how a person who looks so well can actually feel ill or be in pain. The more awareness there is, the easier it will make it for people like me living with an invisible illness.
People need to remember that sometimes there is so much more going on underneath the surface.
As we were all taught, you should never judge a book by its cover.
Amy blogs at butyoudontlookill.com where this post originally appeared.