7 Things People Living With MS Wished You Knew

Cheryl Woodman avatar

by Cheryl Woodman |

Share this article:

Share article via email

There’s nothing like a chronic illness to make you re-evaluate your inner circle. Some friends will be faithful and supportive while others just won’t seem to get it. They won’t understand that you have symptoms they can’t see and they’ll feel frustrated that they don’t know how to help. Feel free to forward this article to all friends fitting this description.

1) MS is not an excuse. There will be good days and there will be bad ones. 

This makes chronic conditions difficult to understand. It can be hard for friends to truly “get it.” MS attacks the body from the inside out and friends can’t see it happening. If it were the flu, there would be a fever. If it were a broken leg, there would be a cast. If someone were falling down the stairs, there would probably be a scream. Instead, MS is silent. The outside world can’t see, feel or hear patients’ fatigue, pain or depression. There will be good days and there will be bad ones. MS is not an excuse. MS is a condition that patients must live with.

2) You may see an inability to walk, but the real trauma is on the inside.

Can you imagine not having full control of your body? Not being able to wake up and roll out of bed to take on the day ahead? Not being able to quickly accomplish simple tasks like getting dressed? This is the reality of living with MS. Now imagine, waking up, never knowing what kind of day you’re going to get. Whether you’re going to be able to jump up and get on with your day. The sense of loss, the feeling of anger, the worry that life is passing you by when all you want to do is get on and live it. This is the reality of MS, a reality where the support and understanding from friends and family can mean the world.

RELATED: 7 strange and unusual symptoms of multiple sclerosis

3) Just because something worked for someone with MS doesn’t mean it will work for everyone.

MS is a chronic condition without a cure. A condition where the immune system begins attacking itself and doctors don’t understand why. It’s unpredictable, it flares in different ways and what works for some does not work for everyone. It’s not like taking antibiotics for a chest infection. Everyone’s symptoms are unique and just because something worked for your cousin or sister doesn’t mean it’ll work for everyone battling MS.

4) Tiredness is not the same thing as chronic fatigue.

It’s hard pushing through tiredness. That feeling of being completely exhausted. The one where you only got five hours of sleep because you went out until the wee hours of the morning. The one where you’re hungover and barely able to keep your eyelids open.

As hard as that battle is, it’s not the same as chronic fatigue.

The tiredness that comes with MS is like a switch positioned to off with a million lead weights stacked on top. It can feel like having the flu paired with jetlag paired with the feeling of having just run a marathon. You feel like you have no control over whether you stay awake. It’s being in the middle of doing something and having to stop. They’ll be no prior warning, they’ll be no obvious cause and pushing through won’t help.

RELATED: What it’s like being diagnosed with MS at 25

5) Being drunk and having MS can sometimes look the same.

Sometimes MS can cause the same things that happen when you’re drunk or tired. You may stumble around like a drunk person trying to clamber your way through a crowd. You may slur your words or be unable to see properly. MS patients can suffer from what look like tremors. MS causes all these symptoms without the need to drink alcohol. Understanding and support are the best gifts you could give.

6) A good night’s sleep does not do for those with MS what it does for those without.

MS causes you to feel tired all the time. Imagine waking up with the same feeling of fatigue you went to bed with. Feeling completely unrefreshed after a well-rested night. Through a whole waking day it can feel like you’re walking through mud. Battling an invisible field of resistance that feels like you’re dragging your body behind you.  Even if you can’t see the ongoing internal game MS plays, allowing for and appreciating this can mean the world to a patient.

7) MS can be really, really bizarre.

It’s not just tiredness. MS affects your entire being: your brain, your movement, your memory, your speech. It means forgetting things more than others. Having something to say, knowing the words but physically being unable to pull them out. MS can sometimes be the elephant in the room. It’s okay to help laugh off these moments. Some even call it therapy.

Stay up to date on all the latest MS news with our FREE newsletter.

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 another 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.

Dancing Doodle

Did you know some of the news and columns on Multiple Sclerosis News Today are recorded and available for listening on SoundCloud? These audio news stories give our readers an alternative option for accessing information important for them.

Listen Here