But You Don’t Look Sick!


But You Don’t Look Sick!

I can hear the words that are coming out of my own mouth. I see you looking at me as if you are listening, so why are you hearing me but not understanding how I am feeling?

Having an invisible chronic illness  can leave you feeling adrift in a turbulent sea of confusing emotions. Anger, sadness, fear, anxiety and hopelessness can all vie for a front row seat in your daily struggle to live a happy, productive life.

Are you tired of hearing such phrases as “but you don’t look sick” or “just take a nap and you will feel better”?

I am left wanting to know, exactly how should I look?

These words coming from the ones that are supposed to love you the most can hurt the most because you expect them, if anyone, to understand. 

It can be hard to find people to talk to that truly know how you are feeling and when they say “I get it” they really do. 

But you are not alone. There are thousands of others who are feeling, struggling, warring with all the same things you are going through.

Having a chronic illness can be a difficult playing field to find yourself in. It is almost like being caught in the middle of two stages of life. Healthy and terminal. You are no longer the vibrant, energized self you might have been running miles just because you could while working a demanding full work week. You are neither facing imminent death, preparing yourself for saying goodbye to everything and everyone you love. 

you are left in a land of suspended limbo, left to figure out how to carry on in this new, unknown chartered course. There is no handbook handed to you on how to cope as you leave the doctor’s office after being given a  diagnosis that would shake you world upside down leaving you standing among the pieces of what had been your life as you once knew it 

Some days fatigue, pain, numbness, dizziness all can make plans you had been looking forward to, become impossible to fulfill.

Wouldn’t it be nice in times such as this to have that special someone to hold you in their arms and not have to say anything. Their comforting presence a balm to your fraying nerves.

No feelings of guilt, disappointment, or shame being thrust on you when you are giving everything you have to fight the battle that is silently waging war in your body and on your emotions. 

With Christmas around the corner, along with this comes a series of get togethers, parties and shopping. All of these things all can bring extra fatigue and anxiety about whether you can meet all of your commitments.

Christmas shopping in a crowded mall which I had once loved has now become a outing that can cause frustration and anxiety. Walking  through crowds of noisy shoppers in a fluorescent lit mall with blurred vision can be anything but enjoyable. dodging inconsiderate teens while trying  to find the perfect gift leaves me wanting to get a Starbucks and return home to do my online shopping.

But alas, this too has a solution. I have started shopping at off peak hours with a gift in mind to avoid aimless wandering. I take my time and instead of rushing, I stop to appreciate the fact that I am able to feel good enough to be out shopping at all. 

When people hear you say you are tired or in pain but do not understand how you feel, do not let it make how you are feeling any less valid. Either they are so self absorbed in their own life to truly understand or they simply just can’t, unless they are going through it themselves. What matters is that you know how you are feeling and you need to listen to what your body is telling you. 

Reach out to others who make you feel heard.

Your symptoms are not imaginary. You are not whining. You are not weak.

You are someone who is dealing with life that has given you something to test your inner strength.

Slow down when you feel panicked. Feel your own heart beat. Feel your breath as if fills your lungs.

That is you. You are not your illness.

Cindy Lee Lothian 

October 25, 2113

About Cindy Lee

I'm a writer, mother and lover of life who has learned that my twenty year dance with the disease MS, has given me Multiple Strengths. I write about love, laughter, healing and hope.
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9 Responses to But You Don’t Look Sick!

  1. Kariann D. says:

    Thanks for this. I needed it today. I have lost and am losing friends due to my ms and not handling it very well. You sure weed out who are true friends !!!!

    • Kariann D. says:

    • Cindy Lee says:

      Hi Kariann,if freinds have left you because of your ms, then they were not true friends. You deserve to have people in your life who love and support you for who you are. Stay positive, people will come into your life that will truly make a difference. We are all in this together. Sending you all the best….Cindy

  2. Rhonda gb says:

    This is a great read…
    It’s a little troubling that there isn’t a cure in a hundred years, but I’m appreciative of the good words sent from the future 😉

  3. alibaba735 says:

    This is all so true! I find that using a cane gives a social signal and it is easier to navigate malls and sidewalks. If I have my cane people are very considerate and help with doors, etc. I don’t like Christmas much at all for a lot of reasons, and I hate shopping.

    So I tend to buy online or to give my nephews and goddaughters $$ which they like better. Many of the gifts we are encouraged to buy by retail advertising are a waste of money and not that useful.

    We also, being seniors, tend to buy consumables for our friends and family. Paying for the turkey or some wine is just as useful as buying somebody something they will unwrap and leave aside as they don’t like it or don’t need it.

    I enjoy your writing!


    • Cindy Lee says:

      Hi A, I enjoyed reading your thoughts and thanks for sharing your experiences. We all can learn a lot from each other by offering understanding and what works for them. Stay well. Cindy

  4. Jane McArther says:

    Hi your writing s so true.
    I choose to tell very few people what crippling disease i have.
    M.S. therefore i can still have friends and be in control who i let in so it doesn’t become me or my life.
    and it really works. People should try it. i’m not public property just because i’m sick

    • Cindy Lee says:

      Hi, you are true that you are not public property but for so long I held things in. Sometimes you just need to speak your truth and not be ashamed or afraid of the outcome. You dare you and there is no need to be anything else. Cindy

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