All posts by EllieB

Personal Story

Judgment

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Today I went to lunch at a local restaurant chain. I’ve been there a lot. The people who work there are friendly. I’ve never had any complaints with either the food or service there.

Today was different. I asked for a large cup of water. I even paid for it, because the free cups of water are ridiculously small & as hot and thirsty as I was, I would have been up & down from the table a bunch of times going to ask them for more water.

I have MS & one of the most persistent problems of the disease for me is difficulty going from sitting to standing, or vice versa. It’s difficult for me to change position in any way.

When I asked this cashier for the large cup of water, I told her why. I told her that I have MS, but I spelled it out. I said multiple sclerosis instead of MS. I told her I wanted the large cup of water because I was very thirsty & that I was having a lot of problems with my legs & didn’t want to keep getting up.

The normally friendly cashier turned quickly unfriendly & turned away saying something under her breath about lazy people & their excuses. She also whispered something to a manager & pointed at me.

I didn’t say anything to the cashier. Just ate my food & drank my large cup of water. When I’m faced with conflict, I usually don’t do anything about it, but I was thinking many things.

Now it’s over & I’m wondering many things. Why did I even tell the usually friendly cashier about my MS? Was it because I wanted to educate, even in small doses? Was it because she was always friendly?

I wonder why this woman felt the need to judge me. I am not lazy, & I do not use my health as an excuse. I make it a point to avoid situations where people could possibly think I was using my health as an excuse as often as possible.

Then I realized – it doesn’t matter. The way this cashier acted did nothing but reflect poorly on her. She may have her reasons. Maybe something happened that caused her to act out. Things trigger odd reactions in people sometimes.

For me, this was just a bad customer service experience. I won’t complain. I have been on both sides of the counter.

But, people, don’t judge other people. You don’t ever know what’s going on inside someone. Just be nice. Or don’t be mean. Geez.

Personal Story

Let’s Take The Invisible Out Of It

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I Googled invisible illness. I know what they are. I live with them every day, but I wanted to see what the internet had to say about them. The internet offers up a basic and obvious definition – a chronic health condition with no outward signs of illness.

Well, duh. I know that. My fellow spoonies know that. Even the average non chronic illness sufferer probably knows what an invisible illness is. The average person doesn’t know it like a spoonie knows it.

I will always firmly believe there is no such thing as an invisible illness. Even though the very definition of invisible illness means a chronic condition with no outward signs of illness. I believe that we all just need to take the time to look.

Because of my MS, I have problems with balance. I often stumble and have difficulty going from sitting to standing, and will fall. Is that invisible? No. I have tremors that cause me to drop things. The mess that can cause certainly isn’t invisible. I faint easily, for a variety of reasons. That’s not invisible. My muscle jerks and spasms can be quite noticeable.

I have cognitive difficulties that mostly cause me to seem spaced out randomly, make me forget the words I need, and do things like put my house keys in the freezer. If you know me, those things aren’t invisible either. Take the time to look. It’s so simple.

But you, my healthy friends, co workers and associates, have blinders on. Most of you don’t, or can’t see the truth. Most of you have nothing but good intentions, but you don’t really see me. I don’t blame you, it’s hard to understand things from a perspective so different from your own.

So let’s take the invisible out of invisible illness. Notice me. Notice how I struggle to get up. Notice when I tremble and shake, or look weak. Notice when I seen exceptionally clumsy. These are signs of my so called invisible illness.

Notice me trying my hardest to push through all the pain and all the struggles. Pay attention. Even when you see me happy, it doesn’t mean that my pain isn’t there. It means that I managed to be stronger than the pain.

Invisible illness can be horribly isolating, even when you aren’t alone. It makes me feel invisibile. All I want is to be seen. Visible.

Personal Story

Gratitude

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Who knew I could be grateful for my MS? I’d love to have never been diagnosed with it, to never have to deal with the pain and all of the struggles. But I do have MS, and it’s here to stay. You know, you can run, but you can’t hide. Some gifts gratitude have given me are:

1. Gratitude has taught me to be more open and made me even stronger. Dealing with almost constant pain and some really strange symptoms have made me learn that I can take a lot more than I thought I could. And I have to be open when I see doctors so much. That openness has automatically transferred to other parts of my life.

2. Gratitude has made it so much easier to relate to other people and their issues.

3. Gratitude has shown me that people are so much more than their outer shells.

4. Gratitude has made me appreciate the beauty in the everyday moments so much more.

5. Gratitude for my MS has made my relationships better, and eliminated the ones that weren’t worth it.

6. Gratitude has lead me to service. It has guided me to volunteer with my support group, and to be an activist in so many ways.

7. Gratitude has taught me to not sweat the small stuff as much, and to realize that most things are small things. It has also taught me to pick the battles I do choose to fight very carefully.

So, to wrap it up, I’m not happy I have MS, but it isn’t going to turn me into a miserable person, no matter how I feel. Never ever give up!