Learn how Living Like You blogger, Willeke, coped with her Multiple Sclerosis diagnosis.read more
When my mother found out I was diagnosed with MS, it was the second time she had been told one of her children had this disease. She walked into her room, shut the door, and didn’t come out the rest of the night. Every visit after, as we figured out where my lesions were and the course of treatment we’d choose, she had a similar reaction…she went into her room and she went to sleep.
I was young and had a newborn at the time I was diagnosed with MS. Of all of the things that hurt about this new part of my life, my mother’s response was one of the more painful. My own mother didn’t care, or so I thought. I eventually realized that my mother was grieving and she cared deeply. I see that now, and have great compassion for what it must feel like to have two daughters with this disease. But at that time, all I could think about was me. I could not comprehend how little she understood about what I was going through.
Her reaction was so different from 99% of my other MS friends’ parents. Their parents wanted to sweep them up, swaddle them, and whisk them away like they were babies needing protection. Many of my friends had to prove to their parents that they could still manage, in new ways, to have an independent life. They’d complain to me and as much as I could sympathize, I couldn’t totally relate. My path was very different—it was one of ignoring a problem, expecting that if we didn’t look it in the eye, it would go away.
Although I couldn’t relate with my mother, I did have friends who reacted the same way. I found myself getting more and more frustrated that nobody seemed to understand what I was feeling or what I needed. So I decided it was on me to educate them. I talked about what I could and couldn’t do. I bought books for them to help them understand.
An MS diagnosis has a rippling effect. It doesn’t just land on us, it ripples out and shakes up our families and loved ones as well. Once I got over the “me” stage where every question was about me and my future, I began to pray and have deep compassion for those people who loved me and were also struggling with my MS diagnosis. I would try to reassure them, “I’m okay.” Sometimes that is all they needed to hear.
This is where it gets tricky. Some will assume that you are okay because today you can go for a 5-mile jog to the store and then load up a few 50 lb. bags of dog food into the car for them. Some can forget that while you are okay, you only have so much to give and there are limits. I once resented requests like these (these are funny exaggerations, no one has asked me to run 5 miles and load several bags of dog food). I would burn up inside, “Don’t they know I’m sick?” Well, no, they kind of don’t. I told them I was okay and I look okay, so they tend to forget.
What I have now learned is to remind myself people are not mind-readers. In the same loving way I discussed what MS was, and that I’m okay to do many things, I must keep the dialogue going.
Parents try hard, but many just don’t understand your day-to-day, so explain it to them.
Again…and again…and again.