Last updated: November 2020
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:
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.
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.
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 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 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.
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.
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.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: