Please Don’t Be Offended When I Don’t Want Your Help
Last updated: March 2018
“Would you like some company?” a friend or family member will ask before a treatment appointment or a neurological consultation.
The number one thing anyone can do for a chronically ill friend or family member is to offer support – pure, unconditional support. So why would I turn it down?
It isn’t personal.
I only ever wanted to be independent. To run my own life. I’m a control junkie, I can confess that is true. So when multiple sclerosis (MS) showed up, with its inability to be predictable yet entire ability take over the wheel of my life at any given time, I got a little punchy. Want to drive? You can’t, you’re partially blind with optic neuritis. And anyway, you’re jacked up on painkillers. Want to keep running? Here’s some weakness and spasticity, you’re lucky if you can walk most of your life more less run. Want to write? Your hands are going to be numb and lifeless this week. Plus, here’s a tremor for good measure.
There are days, weeks and even months when I do quite well, and am well-managed, thanks to an excellent neurological team of doctors and a lifestyle that works for me. When I can jog, and write, and drive.
I like to take advantage of these times.
It makes me feel capable. Independent. Like myself.
There are plenty of times, and likely so many more to come, that I will not be able to take myself to an appointment or treatment. So I don’t like to burn out my supportive community by having them drag me around when I’m perfectly okay to do so myself.
There is another reason. It’s a selfish one.
I don’t want to worry about anyone else’s feelings besides my own during the tough times.
Sometimes, I get good news. I’m stable. The treatment is working. There are no new brain or spinal lesions. The medications I take at home are working.
Then there are times I get bad news. There are new lesions. You aren’t likely going to be able stop this medication with the icky side effects. You need an entirely new treatment, this current one is being rejected by your body.
These are the moments I need to process the news. Alone. I need a new plan, a new approach. Sometimes, I need to grieve for the loss of something in my body or my everyday routine. I have to accept that I have a “new normal.”
It isn’t always pretty.
And I don’t like to upset anyone. I want to worry about my feelings first, get a grip, then go back into my life again where I can put on a smile for my family and friends and be confident when I tell them, “I’ll be okay.”
I’ll be okay.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: