The invisible โBurden: Long Covid‘s Impact on Familiesโฃ and the Need โfor Recognition
The reality of life with longโ Covid is a daily negotiation with limitations, a constantโค recalibration of expectations, and a profound impact extendingโ far beyond theโค individual โexperiencing the illness. This is the experience of many families in the Netherlands, including my own.My wife’s disability, stemming from โฃpost-Covid illness, โขhas fundamentally altered our daily lives. Her days are now defined by carefully managed boundaries, the acceptance of unpredictable โsymptoms, and a โcrucial need for extensive rest -โ sometimes requiring her to rest in โbed โeven to conserve energy for a family dinner.
Thisโ isn’t simply a personal struggle; it ripples through the entire familyโ unit. Even seemingly simple joys, โlike an after-school playdate for ourโ three children, become uncertain. The โขcumulative effect is โmeaningful, and we’ve observed its emotional toll on our โchildren. When we asked โคthemโข whatโค they โmissed most,โ theirโ answer was heartbreakingly direct: a family day trip. A seemingly commonplace experience for many, it’s become anโค unattainable โขgoal for us, not for lack of desire, but due to a lack of theโ necessary energy and resilience.
This experience echoes the โstory recently shared by Anneke,highlighting the erratic nature of symptoms,the difficulty in โmaking plans,and the pain of being misunderstood. It also underscores a crucial point: the invisibilityโ of those living with chronic illness. When illness confines someone to the home,they can easily become overlooked,their struggles unseen.โ Thisโ isn’t limited to families; colleagues at Fontys, and our โฃstudents, are โขalso navigating these challenges – either personally or as caregiversโข supportingโฃ ill loved ones. Students are โincreasingly burdened with care responsibilities when parents or partners become โคunwell.
Last weekend’s โdemonstration in โฃTheโข Hague, representing individualsโ with long Covid, ME, chronicโ Q fever, and โother โคpost-infectious diseases,โฃ served as a starkโ reminder of the scale of this issue. The poignant factโค that many were to ill to participate themselves shouldโ have demanded greater attention.Yet, theโ news cycle prioritized other โevents, overshadowing the plight of thousands trapped within bodies that no longerโฃ function as they should.
This impacts โthousands of dutch families, leading to job โlosses,โ alteredโ family dynamics, โฃand strained relationships.โค Those affected aren’t seekingโ pity, but ratherโค recognition, access to appropriate care, and โmeaningful investment in research and policy. This requiresโ sustained funding for research,โฃ improved access to specialized medical support, and thorough assistance for families balancing caregiving, work, andโ financial stability. Open conversation, including withinโค educational institutions, is vital.
My โขhope is thatโค within Fontys, we continue to cultivate โa culture of awareness and support. โคโข Thatโ we โคremain attentive to the often-unseen struggles of our colleagues โand students. โค Often, the โmost impactful supportโข isn’t found in grand gestures, but in understanding, flexibility, and the simple acknowledgement that someone may be carrying burdens โคwe cannot readily perceive.
Daanโฃ Jansen is a teacher atโ Fontys Hogeschoolโค ICT in Eindhoven.