The crazy thing about living with multiple sclerosis is that stress can make your disease progression worse, but trying to avoid stress can be stressful thus putting you into a perpetual cycle of stress. Ugh…how stressful.
For me, the disease itself is not what stresses me out. It may take me thirty minutes to pull myself up from the floor after I fall down or I may be unable to open an easy to open package even with the aid of a pair of scissors, a blow torch and a hand grenade, but I can work through those things given enough time and persistence.
What stresses me out is unreliable and untrustworthy people.
A few years ago when I began having trouble with my legs, a friend came to me and said she would like to take me to my physical therapy appointments. I was so grateful and thanked her for the offer. Driving for me was starting to become dangerous. The next day as I waited for her to pick me up, she was a no show. My phone calls to her went straight to voice mail, and because my therapy appointment was extremely important, I went ahead and drove myself.
I chalked it up to maybe she forgot. She returned my call while I was in therapy and left a message telling me she overslept that morning and apologized profusely. I forgave her and all was well between us.
A couple of days later, I called her early enough before my appointment as a reminder that I needed help. Once again my call went to voicemail, she didn’t show up so I drove myself. After that, even though I knew she wanted to help, her unreliability was not helpful so I found other ways to get to my appointments.
Just because someone has good intentions to do something doesn’t help a person in need. Good intentions may make the doer feel good about themselves. They can go through their day patting themselves on the back saying look what I’m going to do, but it’s their actions that actually make a difference.
Over the years, I have had people say that they will come to my house to cut my hair so I don’t have to make a trip to the hairdresser, want to set up a cleaning schedule to help me with the cleaning of my bathrooms and kitchen, say they want to meet up for coffee and conversation, promise to stop by once a month to wash my van, and even say they will come over to cut my grass every other week…all without any followthrough.
But it’s the thought that counts, right? Well, actually no, it’s not.
Good intentioned people mean well, but without actions to back them up, those intentions mean nothing. Sometimes it’s better to step away from people who can’t be trusted in order to keep your sanity. And that’s okay to do. One thing I have learned over the years is that I don’t want to be a well intentioned, no action person. If I can’t follow through on what I say I want to do, then I just won’t say it.
I think the non-disabled world doesn’t understand just how much the small things they say they will do for us in order to help, matter. My philosophy: If you say you are going to do something, do it. Occasional changes are totally fine, just don’t make it an every time thing. Words matters.