Those of us who have MS know that our disease can be invisible. We don’t always stumble when we walk. We don’t always use some sort of an assistive device that would alert people to our illness.
So what we often get from those who don’t know better are those “but you look so good” remarks. Sometimes we even get them from friends and family who think that we’re faking our illness, who call us lazy or who simply reject us.
Examples of this pop up in online discussions all the time.
I’m so frustrated. Not 1 person understands how it is to be sick.
I’m tired of explaining
The thing I run into is EVERYONE is a doctor but NO ONE really knows anything. Unless you are going through this you really have no clue.
I often wish there was a way I could share the daily pain I endure with somebody, so they could understand better what it’s like. I mean, just for one minute.
Fact is, I have people around me whom say they understand, but I don’t believe they can truly grasp the level of discomfort/pain I suffer daily.
How could they since they don’t have MS?
What could you do?
You could wear a T shirt that says “Can you see my invisible symptoms?” It might help!On the other hand, you might like to:
- Explain more about how MS affects you and emphasise that it includes invisible symptoms.
- Add in gentle prompts and reminders like “You’ll remember that I can’t walk further than the High Street without a sit down, so can we stop at the bench on our way?”
- Highlight when symptoms are playing up by being open about your limitations, for example, “I know I said I wanted to walk into town but my fatigue is really bad today. I’d like us to take the bus so I can use my energy for shopping once we get there.”
- Try different ways of explaining your symptoms. Muscle stiffness may be an easier concept to understand than spasticity, for example.
- Avoid hiding your symptoms so much. Being more open about the impact of your MS is not the same as making a fuss so perhaps some plain speaking will make a difference.