The invisible Burden: Long Covid‘s Impact on Families and the Need for Recognition
The reality of life with long Covid is a daily negotiation with limitations, a constant recalibration of expectations, and a profound impact extending far beyond the individual experiencing the illness. This is the experience of many families in the Netherlands, including my own.My wife’s disability, stemming from post-Covid illness, has fundamentally altered our daily lives. Her days are now defined by carefully managed boundaries, the acceptance of unpredictable symptoms, and a crucial need for extensive rest - sometimes requiring her to rest in bed even to conserve energy for a family dinner.
This isn’t simply a personal struggle; it ripples through the entire family unit. Even seemingly simple joys, like an after-school playdate for our three children, become uncertain. The cumulative effect is meaningful, and we’ve observed its emotional toll on our children. When we asked them what they missed most, their answer was heartbreakingly direct: a family day trip. A seemingly commonplace experience for many, it’s become an unattainable goal for us, not for lack of desire, but due to a lack of the necessary energy and resilience.
This experience echoes the story recently shared by Anneke,highlighting the erratic nature of symptoms,the difficulty in making plans,and the pain of being misunderstood. It also underscores a crucial point: the invisibility of those living with chronic illness. When illness confines someone to the home,they can easily become overlooked,their struggles unseen. This isn’t limited to families; colleagues at Fontys, and our students, are also navigating these challenges – either personally or as caregivers supporting ill loved ones. Students are increasingly burdened with care responsibilities when parents or partners become unwell.
Last weekend’s demonstration in The Hague, representing individuals with long Covid, ME, chronic Q fever, and other post-infectious diseases, served as a stark reminder of the scale of this issue. The poignant fact that many were to ill to participate themselves should have demanded greater attention.Yet, the news cycle prioritized other events, overshadowing the plight of thousands trapped within bodies that no longer function as they should.
This impacts thousands of dutch families, leading to job losses, altered family dynamics, and strained relationships. Those affected aren’t seeking pity, but rather recognition, access to appropriate care, and meaningful investment in research and policy. This requires sustained funding for research, improved access to specialized medical support, and thorough assistance for families balancing caregiving, work, and financial stability. Open conversation, including within educational institutions, is vital.
My hope is that within Fontys, we continue to cultivate a culture of awareness and support. That we remain attentive to the often-unseen struggles of our colleagues and students. Often, the most impactful support isn’t found in grand gestures, but in understanding, flexibility, and the simple acknowledgement that someone may be carrying burdens we cannot readily perceive.
Daan Jansen is a teacher at Fontys Hogeschool ICT in Eindhoven.
