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An iceberg with the sun setting behind it and a large chunk of ice hiding beneath the surface.

The Iceberg

Having an invisible illness is relatable to seeing an iceberg. On the outside, you can only see the tip. If you don’t take the time to look below the surface, you never realize all of the things people go through that you aren’t able to see.

How to explain your invisible illness

What people see on the surface of someone with MS, is usually what you would see in regards to any other person. You see them looking well, walking, talking, and living what seems to be a great life. But, it’s not until you peek below the surface that you see how this disease impacts our lives on a daily basis. What you can’t see buried under the water are the following:

The sacrifices

We have to make so many sacrifices because of this disease. We have to sacrifice our time, our hopes and sometimes even our dreams. We have to sacrifice money to go to medical expenses and insurance premiums that are beyond ridiculous. Most of all though, we have had to sacrifice our bodies to something we never wanted in the first place.

The tears

There are so many tears shed. Tears from when the pain, fatigue, and symptoms seem too much to bear. Tears because we’ve lost jobs, relationships, and at times, our freedom.

The rejection

Looking from the outside in you can’t possibly see how we’ve been rejected. You feel terrified to let others in on the fact that you have a disease, yet when you are open and honest, people don’t always look at you the same. It’s heartbreaking to feel rejected because people hear you have a disease. It doesn’t matter how capable you are, sometimes just the mention of the disease makes people turn up their noses.

The disappointment

The disappointment can feel so depressing and really bring you down. You can’t possibly know how disappointed we are that day because we had to cancel plans once again. We wake up with so much hope, yet there are so many days where our bodies don’t cooperate and we are left disappointed once again.

The persistence

The definition of persistence is, “firm or obstinate continuance in a course of action in spite of difficulty or opposition.” I feel like with an invisible illness, this is something we do every single day. Even on our worst days, we learn to keep going, and most people have no idea what is going on behind that smile we put on our face. We persist to survive.

The determination

Our bodies may fail us, but no one can see the determination we have to beat the symptoms. We are fighters, and each day we each have our own battles to face. Yet with enough grit and determination, we make it through.

The hope

We have a lot of hope. It doesn’t matter what inner demons we are facing at the moment. There is always hope for a better day. There is always hope that our MS will improve. But, mostly, there is hope for a cure.

There are so many things below the surface if people would just take the time to look. I hope that with MS we are able to spread more awareness, and show others what invisible illness is really like.

XOXO,

Calie

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Bkboo
    6 months ago

    It is an Invisible disease….even when you stammer over words, forget or loose balance, etc…. people will think she is drunk or on drugs. Its frustrating and can make you feel alone. We have to have a fighter within us to be able to persistently be a positive force in life.

  • Shelby Comito moderator
    6 months ago

    Hi @bkboo, the invisible nature of MS and, as a result, the misjudgement and misunderstanding from others can feel so frustrating and hurtful. I want you to know that you’re certainly not alone in these feelings here. I hope this community will be
    a place where you find continuous strength to keep fighting. We’re here for you! – Shelby, MultipleSclerosis.net Team Member

  • Yoshitail9
    6 months ago

    In my 40 years of having MS I never heard it compared to an iceberg. Outstanding and I’ll be using it when I try to “educate” non-MSers about OUR disease.

  • Shelby Comito moderator
    6 months ago

    I agree – this imagery is such a perfect analogy for MS! So glad that Calie’s description will be helpful for you to use as a explantation tool for others. Thanks so much for sharing! – Shelby, MultipleSclerosis.net Team Member

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