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