Letting Go of Appearances in Life with MS

Jamie Hughes avatar

by Jamie Hughes |

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Living with MS can sometimes feel like you’re performing a one-woman (or man) show. Think about it. How many times have you pretended to be OK when you didn’t feel so hot? Have you ever shown your loved ones a brave face instead of upsetting them? Ever caught yourself acting resolutely when, in reality, you were utterly terrified? That’s what I mean.

I thought about appearances this week when a friend showed me something called “Not Fried Chicken,” a creation of Life Raft Treats in Charleston, South Carolina. (Click the link and look at it. I dare you.) It looks like a bucket of chicken drumsticks, but it’s actually ice cream. They take waffle-flavored ice cream, wrap it around a chocolate-covered cookie “bone,” and cover it with caramelized white chocolate, cornflakes, and waffle cone bits. A few days later, I came across the artwork of Kate Jenkins, who creates knitted and crocheted works of shellfish and crustacean art that look even tastier than the real thing. Unbelievable, right?

There’s something delightful about biting into what you think is a chicken leg and coming away with a mouthful of cold, creamy goodness, or being able to perpetually enjoy a shrimp cocktail with your eyes. But, if I’m honest, there’s something off about it, too, an unsettling incongruity that leaves you unable to trust your senses for a while.

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As MS patients, we do this every day. We don’t “look sick,” so people assume we’re fine, and it’s tempting to let it stay that way. We take our medicine and grind out a day, asking for little or no help. We pretend to be a thousand things we’re not at any given moment, and I don’t think that’s OK.

If we’re tired, we should be able to say so. We shouldn’t be ashamed to ask for help or to use the handicapped parking space on the days we actually feel well enough to go to the store ourselves. If we need to gripe and complain a little, someone should be willing to listen. The same is true for the days when we’re happy and want to celebrate despite our disease. We shouldn’t have to conform to other people’s standards because, well, we’re not like other people. We ceased being “normal” the moment the first lesions showed up in our nervous systems.

One of my favorite poets, e.e. cummings, once said, “To be nobody-but-yourself — in a world which is doing its best, night and day, to make you everybody else — means to fight the hardest battle which any human being can fight; and never stop fighting.” Granted, he was speaking to students about what it takes to be a poet, but I think the quote is applicable to us as well. The world wants to tell us what an ill person should look like, how we should act and seem and be. I, for one, am not here for it.

I’m for fighting the harder battle to be myself in every situation — whatever that looks like. I decided a long time ago that MS wasn’t going to tell me what I could and couldn’t do with my life, and I’m not about to let people do that, either.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Nicholas Brown avatar

Nicholas Brown

I recognise the "I'm fine" syndrome - it's so ingrained I even find myself doing it with my consultant. I have to discipline myself to report what's really happening rather than the day to day response of glossing over it all with a wave of the hand and the normal "I'm fine" response.

Jamie Hughes avatar

Jamie Hughes

Sometimes, the Western ”bootstrap” philosophy does more harm than good, right?!

Deb Armstrong avatar

Deb Armstrong

This article is spot on. Thank you.

Lisa Yahl avatar

Lisa Yahl

I couldn't agree more!!

Lisa Yahl avatar

Lisa Yahl

I couldn't agree more!!

Sandy Stolaronek avatar

Sandy Stolaronek

I find myself doing this on a daily basis, because I couldn't actually see myself acting how I feel everyday, otherwise people would never want to be around me. I compare it to being an abnormal person in a normal world. It's a daily struggle within ourselves that we face everyday. I guess you could say that are the best actors in the world!

Beng K avatar

Beng K

It wan'tuntil I joined an online MS groip that I realized how much I have worked to convince others that I am not making up what ai have been feeling. A little make up and ironed clothes make people think that I am lying about the stmptoms I have been suffering through for more than a year and a half. But if I did not do my best to look better, I felt that I would feel even worse because then, the inside is reflected on my external appearance. I have been told all kinds of things by both family and doctors about what might be the reasons I am experiencing my symptoms. Nobody believes the pressure on my chest and back, the tingling and numbness on my extremities, the loss of balance, the muscle stiffness, the dizziness which cause many falls. Nobody believes that it is very hard to do the normal things that people do, that the left side of my body may decide to feel worse than the right on any given day.That because of the pressure on my chest, back and neck, breathing is sometimes compromised. Does anyone want to make up these symptoms, let alone live with them daily? Does anyone want to live with extreme fatigue when one could be enjoying a drive somewhere nice and open? It is absurd to think that people would think that MS is something that anyone can live with without any help or support from those closest to the patient. No, no more pretending. I think we make it worse for us to NOT educate those closest to us, how each could be very hard to get through. It is okay to say what are the symptoms that are making the day difficukt to get through. We will have to TRUST our famiky and friends to be compassionate. We will have to bebrave about the fact that sime of them may not choose to be around us anymore, and trust that others may choose to be compassionate and still love us anyway. It is this time when we will find out who are real friends and family really are. In the past year and 7 months, I have discovered mine, and I am not too disappointed in the people I have chosen to cultivate relationships with over the years. The attrition rate had not been surprising or too painful. It was worthwhile to be upfront with what I have been suffering with. It was okay for friends and family to see me at my weakest. I found out who truly loved me, and this was a gift to treasure fir years to come.

Antonio Silva avatar

Antonio Silva

Hi Beng, thank you so much for your outstanding feedback on an excellent article by Jamie Hughes. These are the simple things that truly make my life worth living. Please carry on.


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