During Pain Awareness Month, I am reminded of the many ways pain shows up in caregiving – how it shapes daily life, and – more quietly – changes how you move through the world, make decisions, and care for yourself and others.

My mom lives with a progressive form of multiple sclerosis. By the time I was in high school, we were already learning what it meant for her to navigate increasing pain and decreasing mobility. In 1996 I moved home the day after graduating to become her full-time caregiver. In 2004, she lost the ability to walk. My days were filled with managing medications, scheduling appointments, coordinating with physicians—all while trying to help my mom manage her pain as safely and effectively as possible.

Because of our family history, my mother and I are cautious about opioids. We understand that they can be necessary – especially in moments of acute, severe pain – but we also know they carry risks. That tension has been present in many of our encounters with the healthcare system, particularly in emergency settings. More than once, when my mother has been in significant pain, we have found that the first suggestion is an opioid.

In those moments, we explain our concerns and ask about alternatives. Sometimes we’re able to agree on a lower dose or a short‑term plan that feels safer. Other times, our only option is an opioid. There have also been times when, because other options weren’t clearly offered, my mom has endured more pain than she should, simply to avoid a treatment path that didn’t feel right to her.

My own experience with pain has further complicated our efforts to find solutions that work. In 2004, I was diagnosed with trigeminal neuralgia, a neurological condition that causes sudden, excruciating facial pain often compared to electric shocks. It is widely considered among the most severe pain conditions, and its impact was once so devastating that it was referred to as “the suicide disease.”

I resisted opioids for nearly a year, but the pain began to affect my ability to work and to care for my mother. Eventually, I agreed to try them and moved, over time, through several medications. When it was time to stop, it took nine months to taper off. I didn’t develop opioid use disorder, but the process was difficult, and I received limited guidance from my physicians about how to taper safely.

These experiences have shaped how my mother and I think about pain care. They have shown us that access to a range of options matters, and that the way those options are presented can influence whether patients feel they are choosing freely or choosing between two difficult extremes. Almost every emergency visit brings us back to the same questions: Is this medication truly the only option? What else might help? How do we balance immediate relief with long‑term safety?

Finding a community has been an important part of navigating those questions. Through the Caregiver Action Network, I have found other family caregivers who understand the practical and emotional realities of caring for loved ones with serious acute pain. Joining the Families, Addiction & Mental Health Network deepened that sense of support, giving me a voice to share my story, find helpful resources, and connect others with information to help them navigate pain treatment decisions.

All of these experiences shape what Pain Awareness Month means to me. It’s about recognizing the reality of pain for people living with conditions like my mom’s, while also acknowledging the experiences of caregivers making treatment decisions alongside them. It’s also about understanding that every treatment plan is different, and that increasing access to a full range of options – including non-opioid treatments – can help individuals and families make choices that feel both safe and effective.

This Pain Awareness Month, Take Control of Pain by discovering resources and support to help you make informed decisions about pain. Some of these resources include:

• Effective Medication Management Tips for Caregivers: Managing a loved one’s medications can be overwhelming; learn practical tips for filling prescriptions, tracking doses and side effects, coordinating with healthcare providers, and safely disposing of unused medication.
• Staying SAFE: To make the most informed decisions about treatment options, access Take Control of Pain’s pain management conversation guide.
• Importance of Coordination in Patient Access: There are multiple stakeholders that play a role in increasing access to treatment; learn how each player must be aligned to support patient access.

In September and beyond, my hope is that more caregivers will the information and support they need, and that our healthcare system will continue to create space for shared decision-making, so families like mine can navigate pain treatment with greater clarity, confidence, and care.

Made possible with support from Vertex Pharmaceuticals

About Vertex Pharmaceuticals:

Vertex is a global biotechnology company that invests in scientific innovation to create transformative medicines for people with serious diseases and conditions. The company has approved therapies for cystic fibrosis, sickle cell disease, transfusion-dependent beta thalassemia, acute pain and acromegaly, and it continues to advance clinical and research programs in these areas. Vertex also has a robust clinical pipeline of investigational therapies across a range of modalities in other serious diseases where it has deep insight into causal human biology, including IgA nephropathy, neuropathic pain, APOL1-mediated kidney disease, primary membranous nephropathy, congenital adrenal hyperplasia, ACTH-dependent Cushing’s syndrome, autosomal dominant polycystic kidney disease, type 1 diabetes, generalized myasthenia gravis, and myotonic dystrophy type 1.

Vertex was founded in 1989 and has its global headquarters in Boston, with international headquarters in London. Additionally, the company has research and development sites and commercial offices in North America, Europe, Australia, Latin America and the Middle East. Vertex is consistently recognized as one of the industry’s top places to work, including 16 consecutive years on Science magazine’s Top Employers list and one of Fortune’s 100 Best Companies to Work For.