Once I was a month into living with MS I had already talked with many other people who had MS.
The first thing I noticed was that everyone's story is completely different. Everyone has different symptoms, responds to medication differently and has different needs for their life.
It's important to be careful not to compare your journey with another's. If your medicine works for you it doesn't mean it will work for everyone else. If you can continue through your life and your job with no issues, it doesn't mean that someone else can fly by as easily as you.
This isn't only true for MS. This is true for all of us that walk through life. Our stories aren't identical. If they were it would be boring. Our journeys aren't the same and what works for you may or may not work for your neighbor.
Our hope is that when we share our stories with one another we can feel that we are not alone. Our neighbors struggle too. We can gather hope from each other's victories. We can gain wisdom from each other's successes. There are no guarantees that another's recipe will work in our kitchen, but we can tweak it and make it our own.
This revelation isn't a bunch of metaphors thrown together. I've had to listen to people try to convince me that their medication was better after they listened to the side effects I was dealing with. It wasn't much farther into the conversation when they finally remembered their horrible side effects. The reality of changing medications comes down to trading one set of side effects for another. I've heard people try to reassure me that I'll be okay because their friend has lived for years with MS and everything is fine. Many others can't see MS on me and are confused about what is really wrong. They look at me like I'm making it all up.
Listen to others when they talk about their scars and don't pretend to know what they are going through or have gone through. Understand and be willing to say, "I'm sorry, that sucks," then leave it at that.
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