A tribute to social work, the field that shaped and now supports me

How my professional background helps me care for my daughter with FA

Elizabeth Hamilton avatar

by Elizabeth Hamilton |

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The rare disease community is full of unknowns. Due to the lack of research for many conditions, we often face uncertain outcomes or futures. Friedreich’s ataxia (FA) is no different, full of various symptomatic possibilities as it affects people in unique ways. As I talk and compare notes with other parents who have children with FA, we’re always surprised by how different our children’s journeys are.

Though there are similarities, the differences are enough that plans of care and treatment plans need to be somewhat specific and carefully thought through for each FA patient, their families, and their extended support systems. Even with all the investments in FA research, there is still so much we don’t know.

I often find myself asking questions about evidence-based practices, and these conversations lead to best guesses as to how to move forward in caring well for Amelia, our 11-year-old daughter with FA. Uncertainty seems to surround so much of our lives, even when talking with experts in the field. Who would be an incredible asset in this process? A social worker.

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Celebrating Social Work Month

March is recognized as Social Work Month here in the U.S. Though it’s often a time to thank professionals in the field, I also want to take a moment to recognize the profession (of which I’m a part) as a whole. Social workers are critical members of any care team, yet they’ve often been missing from our FA journey.

Frequently, we think of social workers when linkages are needed for populations made vulnerable by a mental health diagnosis or financial limitations. Though this role is important, these professionals do so much more. Charged with protecting the self-determination of clients, ensuring holistic assessments, and viewing clients’ needs through both an individual and a systemic lens, they always lend a critical voice to any decision-making process. Whether they’re helping in the creation of treatment plans, reviewing systems of support, or making referrals to new providers, social workers bring unique skills to the table.

They are professionally trained to dig into the unknown to help clients carve out their own path forward. But even more crucially in the rare disease field, social workers help amplify the voices of those with lived experience, reminding others that clients truly are experts on their own realities.

That is why I’m quick to ask for these professionals when working with medical teams, in part to help me think things through. I often ask, “What are we missing? Is there an intervention we haven’t yet thought of that would help? How can we support best practices in caring for our mental and emotional health?”

Social workers can help guide clients in these important discussions that can have such an impact on their well-being.

From the professional to the client

Even now, I sometimes feel lost as to what to do next for our incredible daughter with FA. But then I recalibrate and lean into what I have learned as a social worker. I remind myself to search out best practices, ask the hard questions at our appointments, and advocate unapologetically within systems while also watching for my own burnout. Most importantly, because of my professional training, I continue to push for my community and my FAmily to have a seat at the decision-making table.

So I would like to take a moment to honor my colleagues in this incredible field. From the hard hours to the challenging moments, your work truly matters. You may not always get to see the outcomes of all you do, but know that I am a better parent, person, and professional because of you.

To my fellow rare disease travelers, when you find yourself overwhelmed while sitting in a hospital room and the path ahead seems overwhelming or uncertain, do not hesitate to raise your voice and ask for someone to page a social worker.

Note: Friedreich’s Ataxia 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 another 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 Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


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