Silent and unseen. Mental health and the rare disease caregiver
Written by Paul Kidwell, communications and patient advocacy consultant and co-host of the podcast,InSickness. Men and the Culture of Caregiving
For those following me in this column, my podcast or my LinkedIn posts you know that all my contributions come from 18 years of caregiving experience and that it all starts with love. But if love were enough we would have no disease or need for people like me. The truth is, love isn’t enough and the need for caregivers is both acute and ongoing— an experience which can, understandably, be a persistent source of emotional strain. Just ask any of the nearly 30 million selfless Americans providing care for a loved one with a rare condition as they navigate uncharted medical territory, face isolation and balance overwhelming responsibilities—all while their own mental health needs are rarely addressed.
Each November, two powerful causes are amplified: National Family Caregivers Month and Mental Health Awareness Month. Each issue has enough need and impact to attract global attention, but this year I want to present them together and illuminate the mental health challenges faced by caregivers of people living with rare diseases. An idea whose time has come.
The unique burden of rare caregiving
The demands of caregiving in any context are incredibly demanding. My own experience in a non-rare area (Parkinson’s and dementia) was crushing and ended up re-defining who I was and the life I lived. Caregiving for a rare condition presents an additional and unforeseen weight and set of demands. Rare conditions typically come with uncertain diagnoses (or none), limited treatment options and scant medical expertise or knowledge of these conditions.
In addition to being a primary caregiver, the role of advocate, researcher, medical translator and administrator are added to the mix. Not to mention in many instances, the omnipresent role of parent or spouse. From the time of diagnosis, caregivers must become experts in distilling complex medical terminology and jargon, managing multidisciplinary care teams and navigating intricate insurance systems that may not recognise many rare conditions. At one point a few years ago, I was tethered to a primary care provider (PCP) four neuro and osteo specialists (and their support staff), two surgeons (and their support staff) and a feudal insurance quagmire. At the hospital I was on a first-name basis with the parking garage attendant and the server in the cafeteria who knew how I took my coffee.
I often refer to this situation as “walking a tightrope without a net” as caregivers bounce from uninformed clinicians, to teachers, school administrators, bosses or clients who don’t understand the new set of demands placed on a family or how to integrate them into the current medical, academic or work environment. Perhaps the cruelest of cuts is when friends decide, because they feel there is nothing they can do to help our situation, to do just that—nothing. This emotional isolation can erode resilience over time.
A “Caregiving in the U.S. 2025” report1 from the National Alliance for Caregiving (in partnership with American Association of Retired Persons) reports that 64% of caregivers experience high emotional stress and 45% experience high physical strain. While clearly a small sample of one, I suspect that many caregivers are like me and reject the notion of seeking personal mental health support because of financial strain, lack of time, and/or stigma surrounding mental illness. We are our own worst enemy as our attitude only worsens the crisis we all face.
The emotional toll: beyond burnout
The global discussion around caregiving rarely delineates between non-rare and rare caregivers. For obvious reasons. Many of the issues affecting these groups are universal, however, it’s important to separate the distinct emotional challenges faced by those supporting patients with rare conditions. Chief among these differences is the chronic uncertainty that amplifies the emotional burden of rare disease caregivers. Not knowing the disease or having an accurate diagnosis, experiencing an unexpected change in disease trajectory and triaging the lack of effective treatments keep rare caregivers in a constant and heightened state of anxiety. With chronic and progressive conditions like Parkinson’s that are well known to the medical community, caregivers can at least plan for the occurrence of certain disease changes during that progression with little surprise. The timing of these changes might be uncertain, but they can be expected to occur at some point. Rare disease caregivers don’t have the same advantage because they’re not sure what they are looking for.
This unrelenting uncertainty serves as a catalyst for chronic stress. Of the many caregivers with whom I have spoken over the years the consensus agrees that this feeling of being stuck is the most debilitating state of mind we can experience. Plus, it serves as a launch pad that can bring on numerous physical and emotional interruptions including anxiety, sleep deprivation, social withdrawal and a loss of identity.
Emotional dominoes tumbling into one another.
For rare disease caregivers, chronic anxiety often fuels a chain reaction that can deeply erode mental health and self-identity. Constant worry about a loved one’s condition, unpredictable medical needs, and overwhelming responsibility keep the body in a heightened state of stress, making restful sleep nearly impossible. Over time, sleep deprivation intensifies emotional exhaustion, leaving caregivers too drained to maintain social connections or seek support. As isolation grows, their world narrows to the caregiving role alone, cutting them off from relationships and activities that once affirmed who they were outside of caregiving.
This social withdrawal gradually leads to a painful loss of identity—where the caregiver’s sense of self becomes entirely defined by the illness- creating a self-perpetuating cycle of anxiety, fatigue and emotional disconnection.
In rare disease caregiving, grief is also an ongoing companion. Grief is not a destination as we may think, nor is it confined to five steps as Kubler Ross2 might suggest or relegated to those who have lost loved ones. I think of grief as an everyday occurrence during the caregiving process.
Each day for the past 18 years I grieved for the person my wife used to be, who she became, and for the uncertain future that led to further sadness, heartache and grief. Grief looks and feels differently from one day to the other and how I may react is just as unique.
The ripple effect. Nobody is immune
Emotional health for caregivers can have a ripple effect. Its grip may find its mark with siblings, partners, children and not forgetting the person receiving care. Caregiving is a round-the-clock existence and all will experience a point where their resilience reaches an inflection or tipping point that creates challenges in other areas of their lives. Especially work.
They may have to reduce hours spent at an office, turn down career opportunities or leave work altogether. Twelve years ago, when my wife could no longer work, we became a one-paycheck family and as her illness progressed, I made myself less available for work— ultimately taking a two-year hiatus. This resulted in severe financial strain which compounded emotional distress for me as primary caregiver and breadwinner. This experience is like countless caregivers who also face the same situation and must make decisions that may be beneficial to the person living with this rare disease, but less so for the overall welfare and quality of life for the family.
Supporting caregiver mental health isn’t an option or luxury—it’s an investment in healthier families and communities.
Changing the narrative: out of the shadows.
As we observe both Mental Health Awareness Month and National Family Caregivers Month, it’s time to raise the visibility and value of rare disease caregivers. Individuals who are not just “helpers”—but influencers to the well-being and stability of those living with rare diseases. For this to happen, the “rest of us” must change the cultural narrative around caregiving from an individual personal duty to a shared responsibility. Caregiver health is intrinsic to mental health and both contribute to the larger health dynamic. Not supporting caregivers is the equivalent to the sound of one-hand clapping.
Employers must offer flexible work arrangements to employees offering personal family care. Policymakers must create and fund caregiver mental health programs. Clinicians must broaden their scope and ask caregivers, “How are you doing?” And listen.
References
[1] https://www.capc.org/blog/new-data-on-family-caregivers-in-the-us/
[2] https://www.health.harvard.edu/mind-and-mood/5-stages-of-grief-coping-with-the-loss-of-a-loved-one
Author’s Note: For the past 18 years I was primary caregiver for my wife, Aibai Wu, who was diagnosed with Parkinson’s disease in 2007. Aibai passed away on August 21, 2025. Thank you to all those who supported us during this time and who continue to support me during my time of grief.
We are delighted to welcome Paul Kidwell as a regular contributor and supporter of the caregiver voice throughout 2025. For more information on Paul’s podcast check out insickness.org
