At times, stepping back from advocacy is the wise thing to do

When I’m running workshops for children with sickle cell disease who are transitioning into adult care, I always include a parent segment to teach them how to train their children to advocate for themselves.

For patients living with sickle cell disease, including me, advocacy becomes an integral part of life. Because of the healthcare hindrances we face, we learn to take up the cause early. It’s a lifelong responsibility, a necessity that never dissipates.

Therefore, it’s no surprise that when National Sickle Cell Awareness Month arrives each year in September, patients all over the globe do all they can to be proactive in raising awareness of our plight. I’m usually the same.

This year, however, I challenged myself.

Recommended Reading

June 17, 2024 Columns by Dunstan Nicol-Wilson

Celebrating 3 years of documenting my sickle cell disease advocacy

Regular readers may wonder why there was radio silence from me last month, when most in the community were promoting awareness. The answer is pretty simple: I got married in early September. The three weeks that followed were spent enjoying a mini-honeymoon on the Greek island of Crete and moving into my new home. With these responsibilities, I didn’t have the capacity to undertake advocacy.

Still, I battled myself on that decision for weeks.

You might be wondering why I faced such an internal conflict. On one hand, I was just married. On the other, the sickle cell community needs the advocacy of its patients. After all, cancer, diabetes, and other well-known diseases have proactive charities, with many supporters who don’t have the disease. In contrast, almost all advocacy for sickle cell patients is undertaken and led by patients themselves.

This reality means that we feel obliged to do our bit by sharing our experiences to help move the dial forward, so that collectively we can have better health outcomes. When awareness month pops up, that feeling is compounded considerably. It’s unusual, to say the least, to have the month arrive with no advocacy plans in place.

But I had to be honest. The likely outcome of that advocacy would’ve been missing deadlines, letting others down, feeling fatigued and overwhelmed, burning out, and having a sickle cell crisis.

What my break has taught me

As I return to normalcy and welcome the advent of October, I’m confident I made the right decision — which demonstrates to me that I have the foresight to make the necessary, albeit tough, decisions to maintain my health. That’s a major win, even if the people pleaser in me shudders.

This period has been the first time in all my years as a patient advocate when I’ve taken a break that wasn’t instigated by illness. Though I initially felt guilty, now I see that it’s OK to step back. In fact, it’s wise.

To fellow patient advocates, I want you to know that it’s OK to take breaks, and there’s no reason to feel guilty about it. That feeling of community obligation when we consider a break is one worth challenging.

The good news is that the sickle cell community has a proactive patient base. Many patients are constantly and consistently advocating for the needs of us all. They’ll carry the ball while you take time out. Your temporary absence won’t lead to disaster.

Moreover, you don’t need a major life change to take time out, even though that’s what it took for me. I wish I’d understood earlier that sometimes it’s in my interest to step back and simply rest. We understand this truth in a general sense; it’s why here in the U.K., we have laws in place that entitle us to holidays from our employment. But advocacy is essentially a form of work, too; though it’s usually unpaid, the demands on time and capabilities are akin to a job. So learn to take a break.

Besides, early this year I participated in two third-party campaigns by giving interviews centered on my healthcare journey and dating with the disease. Unbeknownst to me, both those campaigns went public in September — so the month wasn’t entirely silent from me, anyway!

Note: Sickle Cell Disease News 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 Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.