The unseen weight: what dating with SMA really feels like

Zintle Sidzamba
6 hours ago
4 min read

In a raw and honest account, Zintle Sidzamba shares the reality of dating while living with SMA. Ghosting, fear and other people’s perceptions can all take a toll, but Zintle has a powerful message for others who have experienced the same

Getting into a relationship as an individual living with spinal muscular atrophy (SMA) involves navigating not only physical limitations but also profound emotional and social hurdles that are rarely discussed openly. These struggles are often left unspoken.

Living with SMA means my muscles are in a slow rebellion. I look “normal” to most people, but I live with fatigue, weakness and limits that aren’t obvious until they are. And nowhere do those limits feel sharper than in dating. A major unspoken challenge has to be transitioning a partner to a caregiver role, which can inadvertently create a dynamic caregiver burden and that can lead to frustration or the loss of a romantic spark.

If you’ve never dated with a disability, you don’t know and will never understand the extra layer of vulnerability it adds. This is what it’s actually like for me:

The ghosting that stings differently

It’s not just that he stopped replying; it’s why. I’ve had guys who were excited in private. But when it came to meeting friends, going for dinner, being seen together in daylight? Suddenly they’re busy. The silence says what they won’t; they’re ashamed to be seen with me, with my limp andwith the visible proof I’m not their “picture perfect” partner they refuse to admit they want.. That kind of rejection doesn’t just hurt; it makes you question your worth.

The constant math of “Am I a burden?”

Relationships are supposed to be about mutual support. But you start keeping score in your head. If I ask him to carry my bag, am I too much? If I need assistance walking in unfamiliar surroundings because I usually get anxious and lose my balance, will he get tired of it? You don’t want to be the person who always needs. So you overcompensate. You push through pain. You say “I’m fine” when you’re not. Because the fear of being a burden is heavier than the physical weight of SMA itself. Yes, I’m told that I’m a beautiful, smart and confident —a strong lady full of life regardless of my SMA—but that doesn’t take away the fear of being a burden, leading to me keeping emotional distance to protect myself.

The “not enough” trap

I used to love heels. Now I can’t walk in them—I can barely walk without thinking about every step. I see abled women on dates —laughing, walking hand-in-hand, spontaneous. And I wonder: How do I compete with that? SMA took my ability to be “effortlessly feminine” in the way society sells it. No running barefoot on the beach, no dancing for hours, no hiking dates. Dating culture makes you feel like if you can’t offer that version of yourself, you’re automatically less desirable. It’s a lie, but it’s a loud one.

The fear of being replaced by someone without SMA

This is the one that keeps me up at night. What if he meets someone fully abled? Someone who doesn’t need assistance on some days. Someone who doesn’t limp. Someone whose body doesn’t come with a manual. Will he eventually want an uncomplicated relationship? Will he leave for someone “more normal”? The question still stands.

The public’s stare problem

When an abled person dates a disabled person, strangers think they get a vote. The stares in public. Comments like “That’s so nice of you,” like your partner deserves a medal for loving and choosing you. Somehow it turns a relationship into a public service announcement. It’s dehumanising. It’s not an inspirational story. It’s not a charity case. It’s about two people who chose each other. But the sad truth is, the world sees a mismatch first, and a couple second.

So where does that leave me?

Dating with SMA is hard. Not because people living with SMA are hard to love but because ableism makes it hard to be loved out loud, without apology. I’m not looking for pity. I’m not looking for a hero. My worth isn’t measured in steps or stilettos. These struggles, which often remain unspoken to avoid making partners uncomfortable or to maintain an appearance of independence, can make the emotional journey of dating with SMA both exhausting and deeply rewarding when a true connection is found.

To the guys who ghosted: you didn’t reject me. You rejected your own discomfort.

To anyone with SMA who feels this: you are not a burden. You are not less than. You are enough, exactly as you are.

“Life is a series of natural and spontaneous changes. Don’t resist them; that only creates sorrow. Let reality be reality.” – Lao Tzu

And to the right partner: thank you for seeing past the noise. Loving someone with SMA isn’t “settling” — it’s just loving. And that’s more than normal. That’s real.