Tuesday, March 10, 2020

Raising Awareness with MS Awareness Week

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This week, March 8-14, is Multiple Sclerosis Awareness Week!

We're already a few days in, but better late than never. Multiple Sclerosis is not on my list of diagnoses, but it does affect several of my loved ones so raising awareness for it is a cause dear to my heart.

Let's look at the facts of Multiple Sclerosis or MS.

What is MS? Multiple Sclerosis is a chronic, debilitating disease of the central nervous system.

What are the symptoms of MS? Symptoms can vary widely between people, but some of the more common ones are difficulty walking, tingling or numbness, fatigue, weakness, vision problems, bladder and bowel issues, and dizziness. 

What causes MS? No one knows although scientists believe that it can be caused by a combination of factors.

Who can get MS? MS affects 3 times more women than men and is usually diagnosed between the ages of 20 and 50.

How many people are affected? Nearly 1 million people in the US have been diagnosed with MS.

What resources are available?
National MS Society
Multiple Sclerosis -MS Connect Group
Moms with Multiple Sclerosis

Do you have MS or know someone who does? I'd love to hear from you in the comments!

Monday, March 2, 2020

The Most Important Thing You Can Give Your Chronically Ill Loved One

Maybe they were born with their chronic illness or maybe it developed later in life.  Either way, there's one thing that people with a chronic or invisible illness need more than anything else.

They need you to believe them.

The Most Important Thing You Can Give Your Chronically Ill Loved One

One of the worst parts of having a chronic illness or invisible disability is having people think we're faking it.  That we're doing it to get sympathy or so we can get out of doing things.  That we're hypochondriacs, lazy, wimpy, etc.  

We desperately want to be "normal" and to be able to do everything that you do, but our bodies simply won't cooperate.

I spent most of my life thinking that all of my pain, my weird symptoms, my inability to keep up with my siblings was in my head.  Doctor after doctor ran tests, shook their heads, and told me, once again, that they couldn't find anything wrong with me so I must be fine.

And then, when I was 30 years old, I finally had a doctor look me in the eye and gently say, "It's not in your head.  You have Ehlers Danlos Syndrome, and it explains everything."

She made me cry, but they were happy tears because my whole life had finally been validated.  I could finally stop lying to everyone and hiding how awful I really felt and how hard I struggled to get through each day.  I could finally slow down and take care of myself.

Do you know what the most important thing you can give your chronically
ill loved one is? Find out here: https://bit.ly/2x1ffmt

I thought having a name for my health issues would finally make everyone believe me when I said there was something wrong.

It hurts worse now than it did before I was diagnosed because even though I have medical documents and specialists to back me up, some people still don't believe me.  It doesn't help that Ehlers Danlos Syndrome is something that many people haven't heard of or know much about.  Sometimes I wonder if it would make a difference if I had a "real" disease, you know, one that people know about. But deep down, I know it wouldn't. People will either believe me or they won't. I'm not going to waste my low supply of energy trying to prove myself to people who have already made up their minds.

So sit down with your loved one today, look them in the eye, and give them the best gift you can.

Tell them you believe them.