Helping You, Helping Me
Last updated: June 2021
Growing up in a small-town, middle-class household, I was raised to believe showing vulnerability was a sign of weakness. The sentiment was consistent in school and on TV. Boys my age were demoralized by mentors, teachers, and parents when showing signs of defeat. Did you scrape your knee? That's what happens when you're not careful. Crying won't help you! Suck it up. There was no room for empathy. The individual was often responsible for their own pain, self-inflicted or not. Nobody talked about emotions, and being at your wit's end was synonymous with defeat. Showing passion, curiosity, and asking for help? Forget about it. People who try are suckers.
Fighting my ego
I have left that small town and people behind long ago. But the after-effects show up at work, in my relationships, and in my MS care. It's hard to quiet the nagging voice saying, "Help is for the weak". Acknowledging that I need support does not please the ego that has long thrived on accomplishment and individualism. That ego does not leave room for much at all. Being scared about needing and asking for help, I have mostly handled my diagnosis in solitude. Until now.
When you can't do it alone anymore
For me, not asking for help stopped my cycle of grief. Not speaking up allowed me to be alone with my struggles. The bigger the challenges, the more reckless courage I needed to press on. Until one day, the fear was too intense and the challenge too scary to face alone. I had to remind myself of the painful truth, that to move forward means acknowledging a steaming pile of unresolved pain. And this time, I didn't want to approach it alone.
Asking for help when living with MS
I hate to admit it, but MS is usually not a one-person job. Whatever way MS incorporates into your life, it was never meant to be dealt with alone. If my ego had its way, I would get my infusions and prescriptions, and that would be it for dealing with this disease. Being a patient, caretaker, healthcare provider, friend, family: it's hard. Some people do, but I can't do this alone. I need to know my limits and ask for help when I have surpassed them. Doing so without self-judgment is a daily practice for me.
The right kind of help
I'm proud of being headstrong, but there is no pride to be had in going at this disease alone. Inviting people to help you also asks them to deal with whatever you can't or don't want to do alone. That can be hard. To let someone in can be excruciating if, like me, you have associated help with weakness. It gets even more daunting if you ask for help and doesn't get what you need. Everybody is not capable of helping. Asking for the right kind of help from the right people is a form of art. I would offer advice here, but as you might have already figured by the post so far, this topic is not my forte.
Dealing with empathic failures
Once in a blue moon, I find the courage to reach out. Sometimes for practical help but primarily for emotional support. What stops me in my tracks when I feel brave is when I'm met with empathic failures. We are all guilty of making them. You can identify an empathetic failure by the listener's inability to set themselves aside and listen. Instead, they rush to minimize your hurt, offer up (unsolicited) advice, or make it about their experience. They don't stop to ask and listen for what you need. I have heard this again and again. When we reach out but don't meet a listening ear, it hurts. When I share my pain, I want people to listen, not rush in to fix what they probably cannot mend. I think it must be especially hard for parents, but we probably all struggle with this to a certain degree.
Listening vs. fixing
In an earlier post, "Support: Look and You Shall Find," I wrote about the ability to find connection with other people even when you have not lived a day in their shoes. I want to reiterate that showing a propensity for listening rather than "fixing" can sometimes be the best way of helping someone. Some help is practical, and listening won't pick you up from that doctor's appointment (on time). What we need help with varies greatly depending on how MS affects your life. Regardless if you need mostly emotional or practical support, I believe that we all benefit from being heard.
Finally accepting help
When someone offers me help, I tend to resist. I want to feel strong, so I keep going even when I shouldn't. MS, unfortunately, does not take good intentions into account. I want it to listen to me, but I know that it will continue to be the other way around. The healthiest way forward for me is going to be about asking for and accepting help. Like I said before, we are not meant to do this alone — any of it.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: