Vulnerability Can Lead to Acceptance When I Lean on Friends for Support

Having a support network for unexpected situations is helpful with myasthenia gravis

Shawna Barnes avatar

by Shawna Barnes |

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“I haven’t showered in a week. Can you come over and hang out so I can safely take one?”

At 38 years old, these were not words I had anticipated having to string together for someone I’ve known for only six months.

With my spouse as my caregiver, it’s easy for me to take for granted how much he does to help me manage myasthenia gravis. That is until he had to fly across the country to Maine, for a couple of back-to-back family emergencies.

What was supposed to take a week turned into two as the situation continued to evolve. In response, I had to heavily lean on people in my new support network.

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My husband and I moved to a small town in northern Wisconsin just six months ago. In that short amount of time, we have been lucky to build an amazing group of friends that are more like family. Thanks to them, my husband felt comfortable enough to take the trip we both knew he needed to take.

My village, my support network

I relied on four friends to make sure my needs were met without overly burdening people. One brought over my favorite comfort foods and gave me a haircut. Another friend, who owns a local café, checked in on me daily and made sure I ate well. I secured several cords of firewood from a local family so that my husband didn’t have to split wood for our boiler. And all of them helped bring firewood for the wood stove into the house so I wouldn’t have to do it.

It took four families to keep me safe and healthy while my husband was away. I did my part by keeping activities to a minimum and pacing myself. This was incredibly difficult due to anxiety about the family emergency and the fact that I had to receive my regular intravenous immunoglobulin infusion four days after my husband had left. These factors left me feeling both antsy and full of strength and energy.

I felt a strong desire to do all kinds of physical activities, such as stripping the wallpaper from the bathroom, sealing the dining room subfloor with primer so that we can lay down laminate flooring, doing the laundry (in the basement, which requires navigating stairs), or painting the hallway.

There is a time to push boundaries to see how well treatments are working when one is feeling well, and there is a time to be mindful of safety. This time was the latter. It wasn’t safe for me to do any of those things while at home alone. And it wasn’t safe for me to shower, either.

My husband has to help me with showering, and I have bathing wipes that I use when I’m too weak to take a shower. The heat from the shower can also lead to ptosis, difficulty breathing, and generalized weakness.

When it was decided that my husband needed to stay an extra week in Maine, I knew I needed to ask someone in my support network to come sit in the house with me so that I could take a shower to the best of my ability. I needed someone here in case “I fell and couldn’t get up.” Having to ask a friend I’ve only known for six months to help with this task was very hard.

Once I made the ask, however, she made it easy. She didn’t bat an eye and agreed without hesitation.

A wide variety of limitations come with having this disease. But there are also some amazing opportunities, including the opportunity to really lean on my support network and feel the love of people in this community I now call home. There is the opportunity to be vulnerable and be seen and heard. And there is the opportunity to trust a friend and see the beauty in unconditional acceptance.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.


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