Anyone with a chronic disease can tell you that those 4 little words, “you don’t look sick”, is enough to drive them crazy on the spot. I’ve written many blogs about symptoms of multiple sclerosis you’d never see.
Multiple Sclerosis, especially in the beginning, can look silent at first. For the first 8-10 years I had barely a limp when I walked. I would fatigue if I walked too much and by too much I mean miles. Then that limp in my step was more apparent but far from debilitating. My symptoms were mostly sensory. If someone would happen to notice the slight limp, I’d just say I twisted my ankle. I was able to hide my disease for a long time. When a stranger did find out, I’d always hear “you don’t look sick”. When I was having a bad day or even an MS exacerbation and someone would say that, I’d get so frustrated. I’m getting IV steroids and I look good, why because I did my hair and makeup. Since I got dressed for work and ready for the day, that meant I was fine.
Fatigue played a big role in my early days. It never gets better but it was more difficult to deal with mentally in the beginning. Your head still thought you could do everything but your body proved otherwise. Fatigue is not something you see, it’s something you feel. No one looking at you will ever say, “you look fatigued, do you need a break?” Fatigue, as I’ve said many times in my blog, is one of the hardest symptoms to contend with both physically and mentally. Trust me the four words “you don’t look sick” really play a factor in the mental game of fatigue. Especially for a girl, either you too tired to do your hair, makeup and get dressed and then something is said in pity OR you do your hair and makeup and get dressed and look good regardless how the inside feels and your told, “you don’t look sick.”Way back then I did take offense. On the outside was a mask hiding how I felt on the inside and no one really saw it, therefore in their eyes I didn’t look sick.
I have to be honest it’s almost 19 years for me now and no one is going to say to me “you don’t look sick”. I walk with a walker or I use a wheelchair. Sometimes I get the pity looks from people because I’m still on the younger side. I wouldn’t mind hearing “you don’t look sick”, but for me, that isn’t going to happen. My multiple sclerosis symptoms are very loud now. Everyone has a different path with multiple sclerosis so if you’re newly diagnosed, don’t think my fate is going to be your fate, there is an excellent chance it will not. My advice is not to be offended if someone says “you don’t look sick”. It just means your fighting your chronic disease and kicking ass.