Respectfully caring for someone with SMA in private moments

People with SMA often have very little privacy. Because we lack the strength to independently complete most activities of daily living, we rely on others to accomplish those tasks with or for us. Even intimate activities that warrant total privacy, such as bathing, dressing, and toileting, require the presence and assistance of another person.

Throughout my life, many people have provided for my hygiene needs. For the most part, I’ve been fortunate to find people who are respectful of the situation and my privacy. I’m appreciative of anyone that can shower me while carrying on a pleasant conversation without making me feel uncomfortable or self-conscious.

But not everyone has handled these deeply personal aspects of my care as tactfully as I’d prefer because they don’t understand the situation from my perspective. How could they? Most of them haven’t regularly experienced this particular vulnerability and reliance on others as adults.

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Where misunderstanding might occur

Sometimes this lack of understanding causes people to forget that they’re in the bathroom with me because I need them there. The goal is always to find caregivers that I want to be around, but it can take time to become accepting of the added presence in certain moments, even when the company is good. I’m grateful to have their help, but if I could wash my hair myself, I would.

I’ve also found that on rare occasions, my relaxed approach to receiving care gets confused with high levels of body confidence. In actuality, this attitude stems from a lifetime of working with others to manage my care, including a plethora of home care nurses, many of whom are still practically strangers by the time they’re asked to take on personal care responsibilities.

Handling challenging discussions with grace

Whenever I realize that someone has assumed I’m comfortable with them witnessing my nakedness, my instinctual reaction is shock or even offense. That’s a natural response for anyone in a situation where they feel exposed.

While the reaction is understandable, it’s better for everyone if I’m gracious toward the misunderstanding and offer gentle correction and guidance on the truth of this delicate arrangement that I’ve accepted as necessary but don’t desire.

My friend and fellow SMA News Today columnist Ari Anderson also recognizes that it’s best to handle interactions with calm and kindness. In a recent column, Ari wisely writes, “Words of caring can build bridges and heal wounds. If you’re still angry after the initial sting of the first couple hours, try at least to be civil to the other person.”

Expressing confidence my way

None of this is to say I’m not confident about my body. It’s a wonderful body. It has some scars, but those serve as reminders of strength. It doesn’t always function the way I want it to, but it works hard to keep me alive and healthy. My body was beautifully and purposefully made just for me, and I’m so grateful for that gift.

There are many different paths to finding and expressing body confidence. One of my preferred avenues is fashion. It’s a means of self-expression, and I enjoy finding new pieces for my wardrobe. Wearing outfits that complement my personality and flatter my unique body is something that makes me feel good. But once I’ve made my selection for the day, I still need someone else to dress me.

We all need privacy, dignity, and respect

Making sure my body is clean, well cared for, and nicely dressed is important to me. Neglecting my hygiene would lead to illness and discomfort, so I’m willing to sacrifice significant amounts of privacy to maintain my health and hygiene.

The fact remains that many disabled people crave more privacy. The little bits that we do have should be protected and highly respected. That starts with recognizing and acknowledging that quality care often comes at a high price to us and our families, who also forfeit some of their privacy when outside caregivers enter our homes and daily lives.

People with disabilities don’t expect perfection from our caregivers. They’re as human as we are. To maintain a positive relationship between caregivers and care recipients, both sides must be gracious as we work together to navigate circumstances that could potentially put both of us in awkward places. Striking a balance will take time, patience, and practice.

Not everyone needs help with hygiene, but we all need at least an occasional helping hand. Some of us need it more often than others. Whether we’re giving or receiving assistance, one of the best ways we can support each other in those times is to ask ourselves how we would hope to be treated in the other person’s shoes and offer them the dignity that everyone deserves.

Note: SMA News Today 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.