How My Spouse and Caregiver Views Myasthenia Gravis

Can you believe we’re in the last week of November? To close out National Family Caregivers Month, I thought it might be fitting to hear from my caregiver, as I’ve written enough columns putting words in his mouth. I wanted to give him the opportunity to share his unique voice with y’all.

So without further ado, following is what my husband, Justin, has to say, in writing, about being a caregiver to a wife with complex medical needs, including myasthenia gravis (MG).

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SB: What was your first experience with caregiving, and how did it make you feel?

JB: I remember watching my mother and grandmother take care of my great-grandmother in her final days. Back then, I was in my early 20s and had no comprehension of the stress and fatigue caring for another can create.

Not fatigue from the work itself, though there’s that, too. No, the mental and emotional fatigue that come with it. The “did I remember to do.” The “I need to get X, Y, and Z done in W time because their health and safety depends on it.”

This is not even to mention the fear that comes from the possibility of losing someone you’re close with or the fear that no one seems to discuss, that you’re somehow holding them back from pursuits of living their best life because allowing them to chase dreams will mean more work, stress, and fatigue for you. Additional work, stress, and fatigue that you’re unsure you can handle.

How has being a caregiver for your wife affected you?

Caregiving is hard. Much harder than people think because so often those who do it make it look effortless. So much so, in fact, that when done well and on good days for the injured/ill, people may assume that the life you describe isn’t real and you’re trying to game the system, seek attention, or both. This is an especially “enjoyable” feeling to have if that person is someone who is or was once close to you.

What’s it like being a male caregiver?

I get glances at times when I tell people the position I’m in. I’m about 6 feet tall, 250 lbs., spend time in the gym as both a participant and a trainer as my job, and dress like an extra from “Yellowstone.” I’m an outlier.

Most in such a position are women. This isn’t me being sexist; the statistics bear it out. In the general population, more than 75% of caregivers are women. Within the VA [Veterans Affairs] caregiver system, post-9/11 statistics show that 91% of veteran caregivers are women.

Why does this matter? I’ve never talked to anyone about this any further than surface-level conversation. In a decade, I’ve never delved into my struggles, fears, etc., because frankly, I don’t know who to do it with. At this point, I’ve yet to even meet another man in my position. Some of this falls on me, of course. I say I’ve never interacted with someone similar, but I’ve also never sought it.

And while I wouldn’t discount the opinions and experiences of a female caregiver because that would display such significant ignorance I can’t even wrap my head around the idea, I also know I cannot connect fully because men and women process this stuff differently. That may not be popular to say in 2022, but it is the truth. There are differences in genders, and this is one of them. We don’t process things, especially emotions, the same way.

How do you balance being a caregiver and everything else?

I believe how we navigate our duties as caregivers matters. But caregiving is not ALL we are. We can still have hopes, dreams, and pursuits; doing so is necessary and vital to the care of our loved one. In order to be mentally fresh and able to do our best work, we MUST find time to decompress and give our brains and bodies time to rest. These things are not requests, but requirements for doing this job over long periods of time.

I’ve been doing this for a decade. This is the first time the seeds of burnout have entered the chat. It’s been an incredible (some good, some not so good) year that keeps going like it has Energizer batteries. But at this point, the year’s batteries are doing far better at keeping it going than mine are for me. This is the first time I’m acknowledging such, and I feel a mix of relief and shame.

People often talk of caregiving with a dismissive tone, not understanding what actually takes place within such a role. While I would never call someone out, next time you see or hear someone in such a position, please take a moment to consider what that person’s days are like.

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.