You don’t look sick….
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.
https://multipleexperiences.org/2017/01/23/multiple-sclerosis-serious-symptoms-respitory-issues/
https://multipleexperiences.org/2016/12/04/multiple-sclerosis-silent-symptoms/
https://multipleexperiences.org/2016/11/28/lets-talk-about-sex-and-multiple-sclerosis/
https://multipleexperiences.org/2016/08/05/im-not-tired-im-fatigued/
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.
6 thoughts on “You don’t look sick….”
Love this post Jamie. Well said.
Unfortunately, we all have stories like this. It’s the invisibleness of our symptoms that is impossible to explain to other people. That’s why we need each other!
That has been the reward of blogging. Meeting all these amazing courageous people who understand. It’s been a blessing.
I’m new to this blogging group but not so new to this blogging group but not to MS (10+ years).
Your post is such a familiar story and I’m enjoying your blogs
I’m not really good at writing down my feelings and experiences but I’m looking forward to getting to know more people here. Maybe I will be inspired to write at some point too.
I didn’t know what to say or what to write. I woke up one day and decided to blog. It’s been so rewarding meeting other warriors not only with MS but other diseases that fight everyday like us. It’s like an online community of friends. I’m glad you stopped by and if you ever do write, just say what you feel.
MS awareness shirts for my fellow “you don’t look sick” MSers at the website link.
I have a new perspective on this subject after reading this… Year 19 for me as well. Thank you