SMA patient in wheelchair walking small brown dog in park bright sunny day blue skies
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Keeping Relationships on a Roll

From morning to night, my days are adorned with glaring evidence of spinal muscular atrophy (SMA). It would be naive to assume it wouldn’t also carry over into my relationships in some shape or form. It fundamentally impacts how I approach and maintain relationships, so I think it’s important to discuss what that means in practice.

“Make no mistake: I’m not suggesting it’s a bad thing. In fact, I believe it can actually improve relationships… for both me and my partners. ”

New Beginnings and Realizations

When I entered my first serious relationship, our chemistry took the proverbial wheel and neither of us hesitated. I didn’t put much thought into why or how SMA might influence the relationship itself, nor did he, until outsiders offered unsolicited and backhanded remarks. We took them in stride and I began to reflect on how SMA affects the inner workings of my love life.

After comparing notes with other SMAers, I realized we have an edge in unexpected ways. Our relationships inherently require additional layers of communication, trust, and vulnerability—all resulting in deeper intimacy. In my experience, this also enhances the friendship between me and my romantic partners.

Communication, Trust, Vulnerability

SMA involves a lot of daily, hands-on care. It’s a conversation I bring up early on in a budding romance (communication), so we can progress in a way that’s comfortable, compatible, and natural with our dynamic. They’ll need to be okay with having people nearby to help me with basic things—at least, until we’re both ready for them to start doing some of it themselves (trust, vulnerability).

Quality Time

My day-to-day life follows a set routine because, well, there are a lot of time-consuming essentials for me to worry about and none of them can be rushed. For instance, SMA greatly impacts how fast I can eat a meal—and how long I can go without eating. I can’t forego a meal on a whim without facing the consequences almost immediately. So, this leads to an abundance of quality time with my partners. This is true for many areas of my life with SMA. It’s a “stop and smell the roses” lifestyle by design.

Top 3 Tips for Navigating New Relationships

If you’re entering a new relationship, or working towards one, here are a few things to keep in mind as you move forward.

  1. Remember you’re not a burden
    All relationships involve some give-and-take—this isn’t exclusive to SMA, and you bring plenty to the relationship table.
  2. Be candid early on
    Sacrificing or minimizing your needs at the beginning of a new relationship sets a dangerous precedent—one that is likely to harm you in the long-run.
  3. Don’t be afraid to verbally initiate physical affection
    Verbal communication is a critical part of physical intimacy—use your words to offer or invite physical affection.