Recently I have read a lot of posts from others about how frustrating it is to hear “you look great!” or “you don’t look sick”. And I agree, it IS frustrating when you feel that your suffering is being diminished just because you may look better than you feel. Most everyone has gone through a tough time and learned the hard way that sometimes coworkers, friends, family, and spouses are not there for you when things go south. However, I do believe that when most people throw us a compliment it’s done so sincerely. We forget that MS affects everyone around us, and they can be just as scared as we are. They want us to be ok, and it gives them hope when they see us looking well. So most of the time when others say we look good it is coming from a caring place, but still we react to it so negatively. And to be clear I’m not talking about those completely ignorant comments that usually go something like “oh if you do this diet/exercise/supplement you will be cured like my kindergarten teacher’s great Aunt!”…I mean really? Maybe when someone tells us that we look good it doesn’t come out in the right way, maybe we interpret it as being insensitive when it is not meant to be, or maybe we’ve heard one too many times how diet and exercise will, like, totally cure us. I’ve changed my attitude and now when someone tells me I look good I now respond with “thank you”, and let me explain why…
For many this disease hits in our 20’s and 30’s when we are at the peak of our vanity. I myself was an athlete and now I’m a bride-to-be and at the start of my career so I admit it, I do care about how I look…so sue me! In just a few months I went from looking in the mirror and seeing someone strong and beautiful to seeing someone weak, bruised from a long hospital admission, and riddled with welts from Copaxone injections. I mean I’m not throwing myself a pitty party, but I’m just saying it can deal quite a blow to the old ego. Now I’ve accepted that my body and my appearance are going to change, MS or not. Learning to accept the changes with your body or getting over the embarrassment of needing assistive devices is just part of our everyday MS reality. But often the assistive devices we dread so much are our ticket to still living life to the fullest and getting out into the world. We need them because we still have places to go and things to contribute to society, so in reality we should embrace them as tools that symbolize that we aren’t ready to lay down and stop fighting just yet!
Up to 80% of people with Multiple Sclerosis experience depression and sexual dysfunction, and many patients site low self confidence and an altered body image as playing a major role in both. That statistic really got me thinking. Has MS affected my body image? Absolutely! I’ve lost 17 pounds from getting hyperthyroidism secondary to Interferon injections, I have lipoatrophy on my arms from Copaxone, and my once formidable biceps which were a trademark of mine are rather scrawny right now. And has MS affected my self confidence? Again, absolutely! It’s knocked me down and scared the crap out of me at times, but I also learned that I’m pretty scrappy in a fight. I changed career paths, took risks, overcame impossible situations, and started this lovely little blog! In many ways, having been through a bit of hell and knowing I came out the other side has made me more confident. Like a boxer I have a few fights under my belt, I’ve been training hard, and the next time I have to step in the ring I’ll try to anticipate the blows so that I come out with fewer broken bones.
So overall do I think my outward appearance has changed for the worse? Eh, maybe. I have a dent here and there, my favorite jeans are sagging in an unflattering way, and my eye tends to twitch randomly can be distracting during a conversation. But do I think I’m less beautiful? No.
Beauty isn’t about any of those things (ouch, that was pretty cliche of me). My body is an amazing, spectacular, life giving thing. Despite the damage MS has done my heart still pumps, my lungs still breath, my most days my legs carry me around just fine. My hands have literally saved lives, and my smile has probably brought joy to someone out there! My body, overall, does more things right then it does wrong and I now appreciate how hard it works to make me “look good”. For instance, a person passing by me on the street can’t see that my legs have gone numb or feel like TV static because my muscles are still working to keep me upright even though my nerves can’t tell them what to do. This is all because it takes the nervous system a remarkably short amount of time to create new pathways in order to bypass damaged areas, I think highway construction crews could probably benefit from taking a few notes!
People with MS have a normal life expectancy and to achieve this our bodies have to work 10x harder then a healthy person’s. Throughout the war against MS we may loose some battles, and our scars may become more visible. But overall the human body works everyday to compensate for the damage MS has done, and for that I am grateful and proud, and I DO look good all things considered…of course a nice outfit and some mascara help too! Right now I appreciate you noticing I look good and I love it when you tell me that. But if I admit that I don’t feel as good as I look please understand that I mean it, and know that just because my body is badass at its job doesn’t mean that I’m exaggerating.