There are so many misconceptions about MS. For example, the biggest one is that if you have MS you must be in a wheelchair, or have a walker or cane. People with MS will be aware that certain symptoms, such as unsteady gait, sometimes alert others to the fact that we have a health issue. But quite often there are no obvious indications that we have anything going on that is any different to everybody else. Many of us have experienced a situation where our illness is not visible but we could be having problems such as pain, sensory issues or numbness, to name a few. It cannot be seen but nevertheless it is still there.
I myself have been questioned about my disability parking badge and whether I actually need it. Some days I may get out of the car with what looks like little difficulty but in truth it’s possible I did not sleep well because of a leg spasm or because sometimes our MS brains cannot switch off and my brain may have been deciding to have a million thoughts on the meaning of life or why the earth is round. Fatigue can be a major factor and perhaps while we can walk that day, inside it feels like we can barely hold ourselves upright.
I have so many stories of the times I have been misunderstood (or MSunderstood!). If I spoke about them all I would be here until at least 2020! However, one of my most memorable experiences was when I was collecting money at an MS event. As I appeared to be ‘normal’, I got the comment ‘Isn’t it great that you have your health’ with which I replied ‘I have MS but yes, it is good to have my health.’. The person was shocked and said ‘But you look so well’. Again, I ask the question: what should we look like?
MS is one of many invisible conditions such as myalgic encephalomyelitis (ME), Crohn’s disease, lupus and autism. I have two very close friends who have two autistic little boys. They constantly face looks, tuts and comments when they are out with their children because if the kids get overwhelmed they can become upset and they may have tantrums. It’s often assumed that they are badly behaved children or that my friends are ‘bad’ parents. Nothing could be further than the truth. They are amazing parents doing the best they can.
As humans, we need to stop judging what we do not understand and realize that we don’t always know what is going on in somebody’s body or mind. However, I am gladdened to see little changes that make me hopeful for the future. I was very impressed when I was at a UK airport last week for example. I was at the special assistance desk and they asked if I wanted a wheelchair or to walk. A worker was heading by my gate anyway so I decided to walk with her. She handed me a lanyard to wear and explained that they give them to people that have a hidden illness to try and create awareness that not all conditions are visible. I hope more places adopt the same idea. I also firmly believe it is important that in school, children are educated about invisible illnesses. In doing this we can teach kids that not every illness is visible but nevertheless is there. Speaking in schools about MS will always be one of the most rewarding things I have ever done and I was happy to do my bit to educate. Yes, we may have MS, or another invisible illness, but we carry on the best we can and the greatest gift we can receive from people in my opinion is compassion and understanding.