Understanding Ableism: A Personal Journey

"Living with lupus comes with its own set of challenges, but an often overlooked and deeply painful aspect of the experience is the ableism that people with chronic illnesses, like lupus, encounter daily. Ableism, which is defined as discrimination or prejudice against people with disabilities, takes many forms. Those of us who live with lupus often find ourselves at the center of it, even though lupus is an invisible illness.

My personal journey with lupus and how ableism has affected my life is hard to talk about. I hope to offer some insights to those who share similar experiences. Hopefully, I can provide some strategies for navigating a world that often doesn’t understand what it’s like to live with a chronic illness.

What Is Ableism, and How Does It Affect Us?

Ableism is everywhere. It’s not just the obvious acts of discrimination or cruelty. Those are easy to spot. It’s in the subtle comments and the unspoken expectations. Moreso, it’s even the well-meaning advice that often causes more harm than good. For those of us with lupus, it can be hard to explain to others that just because we look fine, doesn’t mean we are. Everyone who has lupus knows it can cause a range of symptoms, from extreme fatigue to joint pain. On some days, even basic tasks feel impossible. But because I don’t always "look sick," I’ve often had to face ignorant or dismissive reactions from others.

One of the most frustrating aspects of ableism is the lack of understanding about invisible illnesses like lupus. People might think, ""You don’t look sick,"" or "But you’re doing fine today, right?" Although I may have days when I appear well, it doesn't mean that I'm not struggling internally. This misunderstanding often leads to feelings of isolation, frustration, and, unfortunately, a lack of support.

The Emotional Toll of Being Invalidated

When I’m met with dismissive comments or assumptions, it feels like my suffering doesn’t matter. I can’t count how many times I’ve been told, "You just need to push through," or ""It’s all in your head."" These words are meant to be encouraging, but instead, they invalidate my what I am going through. It makes me feel like I’m somehow not doing enough, like I’m not strong enough to handle my own health.

Lupus already takes a significant emotional toll. We constantly battle our own bodies, knowing that some days, no matter how hard we try, we’re not going to make it through without rest, treatment, or simply taking a break from the world. When others don’t respect that need, it just adds to the mental strain. I’ve learned that the emotional impact of ableism can sometimes be even more draining than the physical symptoms of lupus.

Living in a World That Isn’t Built for Us

Another aspect of ableism that I notice we can face is the way the world is designed. Public spaces, workplaces, and even social settings aren’t always accessible to people with chronic illnesses. Though lupus is often invisible, the symptoms can leave me feeling as though I’m walking around in a fog. Most times I’m operating like I’ve run a marathon, exhausted and in pain. In many cases, I’ve had to ask for accommodations that others might take for granted, like sitting down for a rest or using a handicap reserved parking space, only to face resistance or confusion.

For example, many people assume that if you can walk, you’re perfectly healthy. But for those of us with lupus, simply walking across a room or standing for long periods of time can cause severe pain or fatigue. It’s moments like these when I’m reminded that society isn’t built for people like me. We have to fight not just for physical comfort, but also for recognition and respect.

What Can We Do to Combat Ableism?

I’ve learned that standing up for myself, when I’m able, is one of the best ways to combat ableism. It’s not always easy, especially when I feel exhausted or defeated. But I know it’s crucial. Here are a few steps I take to navigate the world as a lupus warrior:

1. Speak Up When You Can

Whether it’s explaining my condition to a friend or requesting an accommodation at work, speaking up is vital. I don’t owe anyone an explanation, but when I do take the time to educate those around me, I often find that they become more empathetic and understanding. If I’m feeling too drained to explain, I let someone else advocate for me. Sometimes, it’s a close friend, family member, or colleague. They can help bridge the gap when I just can’t.

2. Set Boundaries

One of the most important lessons I’ve learned is how to set boundaries. It’s okay to say no. It’s okay to prioritize my health over obligations or expectations. I don’t need to justify needing a break or asking for a seat. When I’m assertive about my needs, I find that people are more respectful and understanding. If they’re not, that’s on them, not me.

3. Connect with Others Who Understand

There’s power in community and connecting with others who understand lupus and the toll it takes has been incredibly healing. Online communities, lupus support groups, and even informal meetups have allowed me to share my journey, exchange tips, and offer emotional support to others who are going through similar struggles. We don’t have to fight lupus or ableism alone.

4. Practice Self-Compassion

Perhaps the most essential tool in navigating ableism has been me practicing self-compassion. It’s easy to internalize the negativity from others. However, I’ve learned to be kind to myself. First, I remind myself that I am doing my best, even on the days when it feels like my best isn’t enough. Second, I try not to measure my worth by how much I can do or how others perceive me. Finally, I remind myself that I am worthy of love and respect, no matter what.

Embracing Our Power as Lupus Warriors

Living with lupus in a world that often doesn’t understand chronic illness is a daily challenge. But we, the lupus warriors, have power. We have the power to educate, to advocate, and to set boundaries that protect our well-being. We may not always have control over our illness, but we can take charge of how we are treated and how we navigate our lupus world.

By acknowledging ableism and confronting it head on, we can create spaces that honor our journey’s experiences and support our health. We don’t have to accept the limitations that ableism imposes on us. We have the right to thrive, to be seen, and to be respected.

To my fellow lupus warriors, you are not alone. Keep fighting, keep advocating, and most importantly, be gentle with yourself.