This essay was originally developed as part of a university-level communications course and has been reviewed and approved by a Communications Research Professor. It has been adapted here for a broader audience within the rare disease and mental health community, supporting Give an Hour’s mission.
When a parent hears the words “we don’t know what this is yet” for the first time, something changes. The calendar fills up with labs and scans, the search history becomes a private encyclopedia of acronyms, and the home starts to look like a clinic, with medication boxes labeled, alarms for doses, and the quiet choreography of care. When you have a rare disease, uncertainty isn’t just a season; it’s a whole climate. That climate, along with the love that keeps families going through it, is where compassion fatigue starts.
“Compassion fatigue” has always been a phrase that sounds simple but isn’t. Charles Figley first talked about it decades ago as the “cost of caring,” which is a kind of tiredness that can set in when people keep opening themselves up to the pain of others (Figley, 1995). It feels like this in real life: you still love the person in front of you and want to help, but your well of empathy, patience, and hope can feel low. You find yourself getting angry with a nurse you like. You can’t sleep, or you do and wake up at 3 a.m. with the worst-case scenario playing over and over in your head. You begin to feel numb right when you want to feel most human. Clinically, this pattern is similar to what the trauma literature refers to as secondary traumatic stress, a collection of symptoms that resemble PTSD, not due to the caregiver’s direct experience of a life-threatening event, but rather from their absorption of another individual’s suffering (Figley, 1995).
It helps to say what compassion fatigue is and what it isn’t. People often mix it up with burnout. Burnout happens when you have a lot of stress at work, like too much work, not enough control, or conflicting roles. Compassion fatigue, on the other hand, is at the emotional center of caregiving: the buildup of empathic strain, especially when dealing with trauma and uncertainty. Of course, the two can overlap, and both can happen at the same time as major depression, but they come from different places. Measurement is one way to clear up confusion. The Professional Quality of Life scale (ProQOL) was made to bring these differences together. It puts helper experience into three categories that often go together: Compassion Satisfaction (the pride and meaning we get from helping), Burnout, and Secondary Traumatic Stress (Stamm, 2009). Caregivers, even if they aren’t “professionals,” often see themselves in the items; the point isn’t to make a diagnosis, but to show them a mirror that can push them to act sooner rather than later.
We spoke with Jordan Deines, LCSW, the Director of Community Programs for the Fanconi Cancer Foundation. “For families living with Fanconi anemia, compassion fatigue isn’t abstract; it’s woven into daily life. The constant vigilance around cancer risk, the endless appointments, and the weight of uncertainty create a steady undercurrent of stress.” Jordan added, “It’s important for care partners to understand that experiencing compassion fatigue doesn’t mean they’ve failed as a care partner. It’s actually evidence of how deeply they care and an invitation to extend the same compassion to themselves that they so freely give to others. Research supports this idea that self-compassion may be one of the best ways to prevent and mitigate symptoms of compassion fatigue (Neff, K.D., 2023, Self-Compassion: Theory, Method, Research, and Intervention).”
The risk landscape gets clearer when we move from definitions to the world of rare diseases. Families with rare diseases have to do two things: take care of their loved ones and find care for them. The long wait for a diagnosis, months or years, keeps people’s nervous systems on high alert. It would be hard for any family to coordinate specialty appointments across systems, appeal authorizations, and manage home-based procedures. Doing it while the rules for a little-known condition keep changing makes it even harder. Big, international surveys show how hard it is to balance all of this. A Rare Barometer report from EURORDIS, based on answers from thousands of patients and caregivers across Europe, talks about caregiving that changes every part of life, including work, relationships, money, and social participation (EURORDIS, 2017). The data agrees with people when they say “it’s a lot” (EURORDIS, 2017).
In those situations, compassion fatigue isn’t a moral failing; it’s a normal result of having empathy for a long time without getting any relief. Research examining caregivers of individuals with rare diseases indicates heightened levels of depression and anxiety, sleep disturbances, financial difficulties, and ongoing unmet needs. A frequently referenced survey of parents in Australia and New Zealand indicated that over fifty percent were dissatisfied with professionals’ understanding of their child’s rare condition; nearly fifty percent reported financial difficulties; many reduced their working hours or resigned; and social isolation was prevalent (Pelentsov et al., 2016). These are exactly the outside pressures that make the math of compassion fatigue worse: when support is less and logistics are more, empathy has to do too much on its own.
Recent international efforts continue to enhance the understanding. A 2024 study published in the Orphanet Journal of Rare Diseases highlighted that the complexity of care, the cost of therapies, and the challenge of obtaining timely and accurate information diminish the quality of life for caregivers. The authors assert that caregiver well-being directly influences the well-being of the care recipient (Černe et al., 2024). Other research conducted in 2025 corroborates these findings, indicating that parents of children with rare diseases experience more significant deterioration in health-related quality of life and mental health compared to control groups. Additionally, national initiatives continue to inadequately fund psychosocial support for caregivers (Domaradzki et al., 2025; Steinberg et al., 2025). The message isn’t just that rare is hard; it’s that the way we set up help can make that hard or easier, and we have to choose.
Every caregiver has a different story, but there are some common themes in the phenomenology of compassion fatigue. People say their emotional bandwidth is getting smaller. They are more irritable than they used to be, have trouble concentrating on anything that isn’t medical, feel like they are “on” all the time, have a delayed crash after appointments, and, maybe most painful of all, feel far away from the very meaning that used to keep them going. Intrusive images play like automatic reels at night. During the day, avoidance sets in, letting calls go to voicemail, putting off another hard talk with a clinician, because the system has taught the nervous system to brace. These patterns are so common in helping roles that scoping reviews keep finding new ways to define them and how they relate to secondary traumatic stress (Noor et al., 2025). It doesn’t make the road easier to know that others have walked it; it does make it less lonely and show us what works.
One way to do this is to keep track of what’s going on. The ProQOL is useful and free, and it has clear instructions on how to score (Stamm, 2009; ProQOL, n.d.). Caregivers can use it every month or two, just like people who keep track of their blood pressure, not to label themselves but to see patterns. A pattern of rising Secondary Traumatic Stress scores and falling Compassion Satisfaction scores is a warning sign, not a verdict. It means it’s time to get extra help, ask for a break, or change some of your duties for a while. Clinics that work with rare families can use a short ProQOL snapshot during important times, like when a new diagnosis is made or treatment changes. What gets measured gets cared for, and the nervous systems of the people who hold others together are among the things that need care the most.
Another thing to do is to make the circle of support bigger. Peer support has long been the secret engine of the rare community. When caregivers talk to people who “get it,” two things happen: they feel less alone and they learn more about how to handle things. What words work best for an insurance appeal? How to plan a clinic day so that both we and our child don’t have meltdowns. The quiet room is in the radiology department. Organizations of all sizes, from small nonprofits that focus on specific conditions to larger ones that cover a wide range of issues, keep putting money into mental health programs because they know how they affect families (Global Genes, 2023; Global Genes, 2024). Peer support doesn’t take the place of medical care; it adds to it.
Compassion fatigue at the individual level calls for both gentleness and structure. Tenderness, because being hard on yourself is like pouring gasoline on a fire; and structure, because vague plans don’t usually work out with the day’s logistics. It may sound too easy, but taking two 10-minute breaks during the day, no talking about caregiving, a glass of water, and a walk to the mailbox, can help your nervous system relax. You can also make a care-partner agreement that lists weekly tasks, backup plans, and a simple rule: if you have three bad nights of sleep in a row, you can ask for help. Those little boundaries add up. We often say that resilience isn’t a trait but a set of conditions in trauma-informed care. It’s not hard to understand what makes compassion fatigue go away: getting enough sleep to deal with stress, a friend who texts you “you did enough today,” a doctor who doesn’t judge you for being a caregiver, or a social worker who knows the financial-aid portal inside and out. The exact mix will be different for each family, but the structure of help has some familiar beams.
The story of the systems becomes clear when you zoom out. Families don’t get burned out in a vacuum; they get burned out in systems that expect them to be both project managers and nurses, insurance experts and data analysts. The same studies that talk about caregiver stress also talk about the same solutions: care coordination as a right, not a luxury; flexible leave policies to protect jobs; travel and lodging help when centers of excellence are far away; and regular mental health screenings at the specialty clinics where caregivers are already (Černe et al., 2024; EURORDIS, 2017; Pelentsov et al., 2016). None of these make rare diseases any less complicated, but they do take away the kind of friction that makes empathy exhausting.
The main point of all of this is that compassion satisfaction, or “why I keep going,” can coexist with compassion fatigue, and the goal is to protect the former while treating the latter. Many caregivers say they have moments of deep meaning, like the day a medication worked, the quiet victory of a smooth morning routine, or a child’s laugh making a hard hour easier. ProQOL made that coexistence clear for a reason. When we honor it, we stop trying to decide between “I’m grateful” and “I’m tired,” and we start making supports that respect both truths (Stamm, 2009).
And since rare diseases are related to inherited conditions, there is an extra level of sensitivity to deal with: transmission guilt, anticipatory grief for family members, and complicated choices about having children. These are not abstract concepts; they are stressors with moral significance that influence the manifestation of compassion fatigue within a family system (Pelentsov et al., 2016; EURORDIS, 2017). Part of caring for them is giving them names. So is making sure that genetic counseling comes with long-term psychosocial support and peer connections, not just on the day of the appointment.
There is a similar path if you are a doctor reading this. You can talk about compassion fatigue in a trauma-informed way as part of your normal conversations. You can talk about what it is, how it shows up, and why it’s not a character flaw. A handout with the ProQOL link, some scripts for setting boundaries, a short list of local peer resources, and a warm referral to behavioral health when STS symptoms are present is not “extra”; it is quality care in rare disease (ProQOL, n.d.; Stamm, 2009). If you are a policymaker or employer reading this, the fixes look like benefits and budgets: paid leave that recognizes invisible work, flexible scheduling, travel help for specialty care, and funding for navigators who save families hours of time and heartache. Every one of those moves is a way to help someone who is tired of being kind.
And if you’re reading this as a caregiver, maybe at the kitchen table with a bag of meds nearby, the most honest thing I can say is that your tiredness doesn’t mean you love less. It means you’ve loved a lot in a tough place. You are also responsible for taking care of your own nervous system. Ten minutes of free time. One text to a friend. One question to a doctor: “Can we also talk about how I’m doing?” That is not selfishness; it is taking care of others.
As the field progresses, research is aligning with family assertions: incorporate psychosocial supports into medical care; assess caregiver well-being in conjunction with patient outcomes; and modify instruments such as ProQOL for familial application, rather than solely professional contexts (Černe et al., 2024; Noor et al., 2025). Big umbrella groups still pay for mental health programs, create communities of practice, and push for changes in policy (Global Genes, 2023, 2024). The work isn’t done yet, but the path is clear: normalize, connect, support, and keep the meaning the same.
A note for providers in our network about training. Since many of our clinicians work with families who have rare diseases, Give an Hour is starting a focused, case-based training series for mental health professionals on trauma-informed, peer-aligned care for caregivers. This will include practical use of ProQOL and short strategies for secondary traumatic stress. Please get in touch with Andrea Cobb Jenette, the Provider Relations Manager at ACobb@giveanhour.org, if you want to join the cohort. In the end, compassion fatigue is not a sign of a bad heart; it’s what the body and mind give us after a long time of worrying. It shows that we have been paying attention. The fix is not to care less, but to care more wisely, together.
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REFERENCES:
Černe, T., Fekonja, Z., Kenda, R., Kranjec, M., & Battelino, S. (2024). Experiences of quality of life and access to health services among caregivers of people with rare diseases. Orphanet Journal of Rare Diseases, 19(1). https://doi.org/10.1186/s13023-024-03327-2
Domaradzki, J., Walkowiak, M., & Kurpas, D. (2025). Rare disease, common struggles: Quality of life, caregiver burden, and financial consequences among parents of children with rare diseases in Poland. Scientific Reports, 15, Article 8866. https://doi.org/10.1038/s41598-025-08866-7
EURORDIS—Rare Diseases Europe. (2017). Juggling care and daily life: The balancing act of the rare disease community (Rare Barometer survey). https://www.eurordis.org/publications/juggling-care-report/ (See also survey leaflet PDF for key figures: https://download2.eurordis.org/rbv/20170530_Social%20survey%20leaflet%20final.pdf)
Figley, C. R. (1995). Compassion fatigue: Coping with secondary traumatic stress disorder in those who treat the traumatized (1st ed.). Routledge. https://doi.org/10.4324/9780203777381
Global Genes. (2023). Impact report 2023. https://globalgenes.org/wp-content/uploads/Global-Genes-Impact-Report-2023.pdf
Global Genes. (2024, April 30). Beyond the diagnosis: The critical need for mental health support in the rare community. https://globalgenes.org/story/beyond-the-diagnosis-the-critical-need-for-mental-health-support-in-the-rare-community/
Noor, A. M., Deane, F. P., & Hooke, G. R. (2025). Compassion fatigue in helping professions: A scoping review. International Journal of Mental Health Nursing, 34(3). https://doi.org/10.1111/inm.13614 (open-access summary: https://pmc.ncbi.nlm.nih.gov/articles/PMC11980338/)
Pelentsov, L. J., Fielder, A. L., Laws, T. A., & Esterman, A. J. (2016). The supportive care needs of parents with a child with a rare disease: Results of an online survey. BMC Family Practice, 17, 88. https://doi.org/10.1186/s12875-016-0488-x (open access: https://bmcprimcare.biomedcentral.com/articles/10.1186/s12875-016-0488-x)
ProQOL. (n.d.). ProQOL manual and resources (Version 5). https://proqol.org/proqol-manual (See also the Stamm self-score form: https://teaching.pitt.edu/wp-content/uploads/2019/06/DIFD-2019-ProQOL_5_English_Self-Score.pdf)
Stamm, B. H. (2009). Professional quality of life: Compassion satisfaction and fatigue (ProQOL) Version 5. https://socialwork.buffalo.edu/content/dam/socialwork/home/self-care-kit/compassion-satisfaction-and-fatigue-stamm-2009.pdf
TIME. (2023, November 8). The whole world is at risk for “compassion fatigue.” https://time.com/6332107/compassion-fatigue-risk/ (contextual background on public discourse)
Wolotira, E. A., & Loman, D. G. (2023). Trauma, compassion fatigue, and burnout in nurses: A review of literature. Nurse Leader, 21(1), 85–90. https://doi.org/10.1016/j.mnl.2022.09.004 (clinical context; not rare-specific).
Steinberg, A., Schauer, S., & colleagues. (2025). Evaluation of the health-related quality of life and mental health of parents caring for children with rare diseases. International Journal of Environmental Research and Public Health, 22(7). https://doi.org/10.3390/ijerph22070876 (open-access article page: https://pmc.ncbi.nlm.nih.gov/articles/PMC12081942/)
