But You Look So Good...

After reading my friend Suzy’s blog today about her father’s comments on her MS and receiving an email from a new MS buddy in Texas with the same theme, I decided it was time to tackle the “But you look so good” aspect of Multiple Sclerosis. And I thank both Suzy and Suzanne for sparking the idea today because I’m certain what I HAD written earlier (and not posted) about Easter was surely to offend someone somewhere!

If I had a dollar for every time a well-intentioned person has told me, “But you look so good,” in response to learning I have MS, I’d be one rich…person. I had to edit that last sentence at the end because my history of passion about this subject has often led to fits of swearing and inappropriate behaviors.

When I was first diagnosed with MS, the statements about looking “so good” were incredibly offensive to me and I often felt hurt by them. After all, it wasn’t my fault I “looked good” or that I was diagnosed with Multiple Sclerosis. It also wasn’t my fault my disease hid itself so well under my “good looking” exterior. I began to get a guilt complex because I “looked so good” and wondered if I shouldn’t be walking with a cane just for the hell of it or checking out one of those motorized scooters at the store just to flaunt my MS. If I didn’t “look so good” on the outside, perhaps my friends and coworkers would understand just how miserable I felt on the inside.

If you have MS, you already know and live with the fact many of its symptoms are elusive and never show themselves on the “outside” of your body. There is no growth to point to, no discoloration of the skin, and often nothing at all external that would tip someone off and identify you as having MS. Many people with MS “pass” in the general public as healthy, “un” diseased individuals. For this very reason, it’s a good thing MS is not contagious! G. Q. Public should actually be thankful for this.

But looking good and feeling good are two, separate matters, and often times it’s the “feeling good” part people don’t hear well. Let’s face it…we are a society of judging books by their covers, in spite of an age old proverb warning us not to do so. What we see is what we get, or so we often believe. And I believe this is because we see what we WANT to see and nothing more.

After several months of internalized hurt feelings, I began to explore what was really behind other people’s comments of “but you look so good”, and I started examining why I was choosing to feel hurt by this. At first, I simply pointed my finger at ignorance, blaming others for their lack of education and insight into what Multiple Sclerosis was all about. AND…unfortunately I took a big leap on a fast moving bandwagon and started rolling over anyone in my path, deciding it was my “job” to educate them with swift and pin point knowledge of the symptoms and effects of MS. I quickly learned most people simply didn’t care to learn what knowledge I forcefully imparted on them. They recoiled in fear.

After sending some of my friends cowering in corners, I next decided the best approach was to pretend I didn’t care what they said and I was not in the least fazed by their comments. This really didn’t work well either, because the truth of the matter was I DID care. It felt bad. I desperately needed and wanted them to understand what I was going through and how horrible I felt.

Finally, at stage 3 of my transformation of the “But you look so good” response, I was able to turn my gaze inward and examine what it was I feeling and responding to on a deeper level. After all, changing other people’s behaviors is a lot like herding cats…it just can’t be done until the cat decides to go where it wants to and hopefully it will be in the direction YOU want the feline to go!

What began to surface for me in the feeling realm was sadness, fear, and shame. The sadness part was quite obvious…I had been given a life altering, unpredictable, potentially disabling disease diagnosis. My life as I knew it had been changed forever and my own mortality was staring back at me in the mirror. I was saddened over losses now upon me and yet to come. I cried many hours of tears in my struggle to accept this diagnosis and all it entailed. There was a huge iceberg of sadness hidden beneath my external surface that the “But you look so good” crowd was never privy to see. It was no wonder they had no idea how much pain I was in emotionally or physically…I never let them in to see it for fear it would scare them away.

My fear centered on the unknown and what “could” happen to me every morning I woke up. Each morning during my early diagnosis time, I would cautiously open one eye at a time, checking my vision to make certain I hadn’t gone blind in my sleep. I would carefully check the rest of my body for weakness, paralysis, or any other pain that “could” be the result of MS. And if there was a new tic or tremor, I would go circus freak crazy about it in fear, running to the end of my own life in my mind before my body had a chance to catch up with the idea! Over time, however, I didn’t die in my sleep from MS or become instantly disabled without recovery, so my fears lessened. But again, the “But you look so good” crowd never knew how frightened I was…I was too prideful to let them in on this little secret.

My pride led me to explore my feelings of shame. Now this feeling was a bit hard to grasp or understand why it was there. It’s still a difficult subject to formulate words around, but I’ll give it my best shot here. I felt shame that I was “diseased”. I felt shame that I didn’t “look sick” when some of my MS friends were in wheelchairs or walking with walkers. I felt ashamed to look healthy and not the poster child for the MS movement. How WOULD anyone ever know my plight or pain if there were no external manifestations of it? Perhaps they would conclude I was lying? And, when I actually did feel good, perhaps I WAS lying to gain their sympathies? The thought of deceiving others knowingly or unknowingly causes me great shame.

As you might have guessed already, I EXPECTED others to simply “know” what I was going through without ever having to take the risk or responsibility of telling them. I never had to risk rejection and I certainly never had to take responsibility for my own feelings and actions if I expected others to do this for me. I could hide like a chameleon underneath my own skin and just be pissed off at everyone for not guessing what I was thinking or what I was experiencing.

If you’ve read any of my previous blogs, you already know I work in healthcare and in the mental health field specifically. So, I feel I can say as an expert here, HOW I WAS FEELING AND BEHAVING WAS NOT HEALTHY! I certainly was NOT practicing what I preached in my own life and this caused a great deal of consternation to my psyche! I had to choose a new way to think, feel, and behave if I were ever going to get through to the “But you look so good” crowd.

Now mind you, I did come up with several sarcastic responses along the way for the “But you look so good” people. One of my favorites was, “I know, but I’m selling tickets for the freak show tomorrow to raise money for MS awareness. Wanna buy one?” Or (said with a puzzled look), “Hmmm…but YOU don’t. Maybe you should think about getting MS?” Or then there was the simple throw my hands up in the air and mutter under my breath, “Oh, bite me”, response. That one always went over well.

Now what I choose in response to the “But you look so good” comment is quite different and it feels very different for me as well. When someone responds to my MS with, “But you look so good”, I simply say, “Thank you. I do, don’t I? Would you like to know how I feel?” I give them the option of either dropping the subject at that moment or engaging me in further discussion about MY MS and MS in general. And if they really want to know, they will encourage me to continue.

I encourage you to explore your own feelings around this topic and decide for yourself how YOU need to respond when others misunderstand your situation. But more importantly, I offer you courage to take the risk to TELL others how you feel if the relationship is truly important to you and you feel hurt or offended by their responses to your MS. You may find out your response to what they say was never what was intended at all. You may find out their response to you was, in their own way, an attempt to make sense out of your MS, but they simply don’t know how to say what they really feel. Oddly, you may find out the “But you look so good” comment is actually one said stemming from the person’s own fear and sense of helplessness. If that be the case, then perhaps you both have a lot in common already.

Happy whatever it is you might be celebrating this weekend…