Why Advocating for Yourself Feels Difficult, Especially With Family

For those grappling with Axial Spondyloarthritis (axSpA), moments with family can quickly become challenging encounters that leave us frustrated and misunderstood. I vividly recall a recent holiday visit with my mother and brother, an experience that highlighted the often-overlooked struggle of advocating for oneself when facing a chronic condition.

As I gathered with my family, I couldn't help but feel a sense of isolation. Despite their good intentions, my mother and brother seemed oblivious to the impact my condition had on my daily life. The lack of understanding and empathy left me grappling with the question: Why does advocating for oneself, especially within the confines of family, feel like an uphill battle?

It's not just about managing symptoms but expectations

Living with axSpA entails more than just managing physical symptoms; it's about navigating a complex web of expectations. This often stems from a lack of awareness about the condition itself. Because axSpA's symptoms can vary in intensity, it may be challenging for others to comprehend how much it impacts one's daily life. In addition, societal misconceptions about who is affected by arthritis contribute to the difficulty of advocating for oneself, especially with family members.

However, that doesn't excuse a lack of empathy

Even though I like to think of myself as pretty independent, I often yearn for the support and understanding of my family. Unfortunately, what I often find myself encountering is a dismissal of the gravity of my condition. That has led me to be more proactive in self-advocacy, even when faced with well-meaning loved ones. It also highlights the importance of becoming better at articulating my needs.

Here's what's helped me become a more effective advocate

1. Develop open lines of communication with family

I've learned the hard way family may see me, how I "used to" be rather than how I am now. Even though it's not necessarily our responsibility to educate others, sharing educational resources can make our lives easier. That can be through articles, videos, or firsthand accounts that paint a vivid picture of life with axSpA. By doing so, you educate them and spark empathy and understanding.

2. Advocate for your needs by establishing clear boundaries

I'll be the first to admit that setting boundaries with family isn't always easy, but it is necessary. You can start setting boundaries by communicating when you need rest or accommodations. Even though it can feel awkward, especially with parents or older siblings, you don't need to be afraid to assert yourself. A supportive family will appreciate your honesty and be more willing to adapt to your requirements. Those who aren't might need to be family you keep at a distance.

3. Invite your family to be a part of your healthcare journey

Now, the level of access you give your family may depend on the level of support they have shown. You might feel comfortable with them attending medical appointments with you if they've been very supportive. However, if they haven't shown a significant level of support in the past, start with having open discussions about the emotional toll of living with axSpA. Whatever access you choose to give, involving them more in your healthcare journey fosters a sense of shared responsibility and empathy.

Remember that the challenges of self-advocacy can be overcome

The key lies in equipping ourselves with knowledge and tools to break down barriers and pave the way for a more supportive, empathetic network that recognizes and validates our journey. So, let's turn these challenges into opportunities for growth, understanding, and stronger familial bonds. After all, with the right tools, we can transform frustration into a shared journey toward a more compassionate and informed family dynamic.

Do you have any tips that have helped you advocate for yourself? Please share them with us below.