With Multiple Sclerosis, I Do Not Have to Feel Fine to Be Fine

With Multiple Sclerosis, I Do Not Have to Feel Fine to Be Fine

Jennifer Silver LiningsYesterday, the clerk at the grocery store asked how I was feeling. Having known her for 15 years, I glanced at her over the rim of my sunglasses and we shared a knowing laugh before moving onto inane topics. She knew exactly how I was feeling without my saying a word.

My relief was palpable.

Why is this simple question often so complicated to answer? As my journey with chronic health issues evolves, so too have my answers. While I answer most questions with bold honesty, this one is exempt. There is no succinct way to answer such a loaded question.

Some people ask to be polite and not because they want your truth. This is perfectly OK. Social norms make people feel obliged to ask, but there is also the expectation that one’s answer will be abbreviated.

I am fairly adept at knowing who is genuinely interested in hearing about my health, and among these individuals, I choose to elaborate — though only periodically. If I sound cautious about over-saturating those around me with too much information, you read correctly. I am careful to be “Jenn” and not my disease. Regardless of how invasive it may become, multiple sclerosis will always remain just a part of who I am.

Oddly enough, even on the more trying days, when I refrain from elaborating, my mindset follows suit. In an environment where I need to be “fine,” I am sometimes able to be just that. I’m not suggesting that I change myself to fit, rather that I create workable boundaries.

People are incredibly supportive in vastly differing ways. While some are open to hearing details, others prefer generalities. These proclivities are not reflective of how much they care for me, they are simply different. I spent years creating correlations, which proved to be unnecessarily exhausting and ultimately counterproductive.

I am far more interested in sharing mutual interests or hearing about others. I once was an utter failure at the art of conversation, until I decided not to be. You can see a spark of light when you ask someone about a topic they love. Equally, you can witness that same light flicker when you become myopic about your own interests. This is not good or bad, but rather part of the human condition, and developing awareness of this fact has helped me to grow.

Removing the spotlight from my health has allowed it to illuminate things that I love that illustrate my purpose. I enjoy shining a light on my rescue work with dogs along with other causes dear to my heart. I nerd out talking about computers, revel in discussing music, and (too willingly) share my ever-expanding knowledge of sports.

I love it when people look perplexed at my answer of “fine,” because most of the time I am just that. I do not have to feel fine to be fine; I can be both fine and not fine, as life is rarely that singular or simplistic. Multiple sclerosis does not define or confine me, and you can be sure as hell it will never outshine me.

Just ask me.

***

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.

Jennifer Powell is a health writer and weekly columnist on Multiple Sclerosis. Jennifer imparts her hopeful optimism into real-life challenges facing the MS community. Prior to writing her column, Jennifer freelanced for several online periodicals including WebMD. When not writing, Jennifer enjoys volunteering with animal rescue, traveling and spending time with her Golden Retriever.
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Jennifer Powell is a health writer and weekly columnist on Multiple Sclerosis. Jennifer imparts her hopeful optimism into real-life challenges facing the MS community. Prior to writing her column, Jennifer freelanced for several online periodicals including WebMD. When not writing, Jennifer enjoys volunteering with animal rescue, traveling and spending time with her Golden Retriever.
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12 comments

  1. Jen says:

    My standard answer to “How are you?” is “Fabulous, how about yourself?”
    I own My MS…..it doesn’t own me. Regardless of how I actually feel, I normally look fine. I see it better to put a smile on my face and say “Fabulous!” than to make someone else have to listen to my garbage. I like being around happy, laughing, smiling people. Talking about My MS would kill those smiles. Besides, the people closest to me can tell just by looking at me whether I am feeling good or feeling bad. Nothing needs to be said, we ignore it until it needs attention. My MS is going to be with me forever. Complaining to people won’t make it better. Might as well face it with a smile and a good attitude.

    • Jennifer Powell says:

      Amen a thousand times! Cheers to your attitude and astute perception as you are right.

      Those closet do know and they are lucky to be in your light!

      Jenn

  2. Kathleen says:

    Jennifer Thank you for your words… they have been helpful to me! I have had MS for almost 11 years now and just beginning to grasp it all … and figuring out ‘me’ with it! I am in my 50’s and disappointed that in spite of my life experiences I have been struggling with the emotional impact it has taken on me and having been less than the kind, positive and resilient person I used to be. Having just read your words I immediately understood your comments about your dilemma about how to answer ” how are you?” A light bulb went on as I realize that is one of the most difficult things I’ve found to negotiate in my life with this disease, suffice it to say, it has made me miserable… AND THEN I READ YOUR words as they popped up on my tablet from multiplesclerosisnewstoday.com and I felt relief… YES THAT IS HOW I FEEL TOO + your sharing how “unnecessarily exhausting and ultimately counterproductive” you felt at one time… THAT IS ME NOW:( However, I feel hopeful suddenly, less alone in my experience and more compassionate with myself. You’ve reminded me what I already knew but have been forgetting… I now feel inspired and braver to make peace with the difficult emotions and anger and resentment I’ve been struggling with – thank you for helping me understand myself better which may help me return to my more compassionate self that I seem to have lost in my struggle… I hope another step in acceptance of things as they are and making myself happier in the process and others too!

    Kathleen

    • Jennifer Powell says:

      Kathleen thank you so much for both reading my column and such brave honesty in your reply.

      I truly believe learning and acceptance with anything as chronic, beguiling and ever-changing as MS is a continuum. We need to be kind and gentle with purse especially when we feel lost and let down.

      You are still that person, you are also having a hard time and that is ok! You can hold both without losing yourself.

      Thanks so much for writing, we are on this together.

      Jenn

    • Keven says:

      I sure am glad for you. I’ve pushed through with all the bones broken in my foot, torn rotator cuffs, broken hands fingers and feet. Leukemia, hemochromatosis, diabetes! But the fatigue that MS carries in its pocket book is definitely no joke.
      I just don’t know what to do about it, surprised I didn’t fall asleep while writing post? I’m proud of you, few people in this world could do the work I’ve done, I’ve worked 150’ above the ground hanging on with 1 hand and working with the other. Welding 26”round steel pipe, replacing 48” butterfly valves that where hand made, and 70’ below the ground! Or flying a A/C unit into a spot with only 5/8” to spare. Not working is one of the worst thing I could have ever imagined. Work defined me! And now I’m truly grieving! Don’t know how to sit in a rocking chair!

  3. Kelly Murphy says:

    I’m with you Jenn!

    At different times in the past fifteen years since my MS diagnosis, I’ve caught myself beginning to saturate friends with too many details, when asked how I’m doing. And thankfully, I’ve been able to re-examine my oral over-spillage of yuck and then, eliminated that need to talk in a Debbie-downer mode. When I don’t enjoy a one-on-one conversation, I can easily point to having solely created that negativity. And then, I must forgive myself for pulling my friend into my dark spot to share. I want to be the upper, the one who brings people up, not pushes them down into the depths of despair with my personal anecdotes.

    Forever grateful for a female friend who is an excellent listener and loves me unconditionally, I’ve even learned to select amounts of info to share with her because my time with her is so precious. We learn together, laugh together, share mother and grandmotherhood stories, and pray often together. Jesus is the center of our friendship and that is such a gift that I don’t want anything to spoil it (especially details that no medicine or physician on earth can fix)!

    For casual friends or acquaintances who ask how I’m feeling I like to respond that “EVERY day is a good day, although some are easier than others” and then quickly follow up with, “and I hope you’re enjoying a good day like I am.”

    Oh, and I’ve learned a huge smile as I approach an individual I’ve never met is the best way to greet anyone. Because, as you said, I want to still be me, not just an MSer. And that’s what Kelly does. She smiles. A lot!

    • Jennifer Powell says:

      It certainly sounds like you’re well prepared when need be. I think that’s half the battle.

      I love your ‘stock’ answer, way to spread smiles too!

      Jenn

  4. Pauline Phelps says:

    I attend a physiotherapy exercises class and we often ask each other how we are. I can genuinely reply ‘ I’m fine thanks ‘ because I do feel better being out of the house and socialising with this friendly group of MSers.

  5. Jeff says:

    I dunno, they gotta say something. Seems like when I get this question I always remember the line from the Jackson Brown lyric: “People ask you how you’re doing ’cause it’s easier than lettin’ on how little they could care!”

    So I just smile and say something to the effect: “I’m havin’ more fun than I can stand!” That usually gets me a quizzical look and they continue right on with whatever they were doing. Jackson is right.

  6. Carol says:

    Whenever anyone asks how I am, I usually respond with “I’m good thanks, how are you”. Other people have their own stuff to deal with on a daily basis. Friends and loved ones who know me well, automatically know if I’m experiencing fatigue just by looking at me.
    I’m a positive person and try to count my blessings.
    I’m surrounded by wonderful friends and family and class myself as truly lucky. Although I do believe in karma…… you get back what you give out.

  7. Annie says:

    I usually say ok, meaning not good but that will suffice anyone who is just making small talk conversation. There are people we can trust and do care and that’s who I can share true feelings. Important for me to set tasks for a day and get through them and make time for family and friends that make me smile.

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