The price of care: How chronic illnesses reshape families

“I can never dream the way I used to dream,” she said. “My energy used to be on another level, but right now I have to slow down. Every day is a struggle to accomplish half of the things I used to do.”

Multiple Sclerosis, a chronic autoimmune disease affecting the central nervous system, has changed nearly every aspect of her life. Even attending a school meeting for a child, she sponsors now comes with hesitation.

“It just crossed my mind; can you even stand in the queues?” she said. “Before, you would just wake up and go. But right now, you’re doubting yourself.” For Maimuna, the emotional and financial toll of chronic illness has been just as difficult as the physical symptoms.

“Just them asking me, ‘How are you?’” she said of her family. “They help me around the house; they come with me to appointments and remind me that I can depend on them.” Still, the financial burden remains overwhelming.

“The medicines are expensive and sometimes out of stock, so I have to import them and buy them in bulk,” she said. “Medicine has become a priority even more than food.” She also described spending years treating the wrong condition before finally being diagnosed with Multiple Sclerosis after the disease had already progressed.

Because the illness is largely invisible, Maimuna says many people fail to understand the reality of living with it. “Somebody can think you’re pretending when you say you can’t walk,” she said. “But truly, sometimes the struggle is inside your body.”

Chronic illnesses such as Multiple Sclerosis, diabetes, cancer, HIV/AIDS, kidney disease and hypertension often require lifelong treatment and monitoring rather than permanent cures. While much attention is placed on patients, the emotional and financial burden carried by families and caregivers often goes unnoticed.

Ahmed Kamal, a pre-intern doctor at Mbagathi Hospital who holds a Medical Doctor (MD) degree from Tbilisi, Georgia, said families caring for chronically ill relatives often struggle under the weight of long-term medical expenses and emotional exhaustion.

“The biggest challenges are financial, mental and emotional,” he said.

According to Kamal, many families become responsible not only for medication and hospital visits, but also routine laboratory tests, insurance costs and even sourcing blood donations in emergencies.

“From what I’ve seen, there’s a shortage of nurses, meaning families often become the primary caregivers,” he said. Kamal said chronic illnesses are frequently misunderstood because many conditions can only be managed, not cured. “People forget what that management costs families,” he said.

Kamal said some patients struggle with stigma, depression or medication adherence, placing additional emotional pressure on families. “Some patients feel like they are burdening their families,” he said.

Research has shown that long-term caregivers are at increased risk of burnout, anxiety and emotional fatigue as they balance caregiving with work, parenting and household responsibilities.

For trained caregiver Ali Suleiman, caregiving involves far more than assisting with medication or hospital visits. He described caring for bedridden patients, people in comas and individuals living with mental health conditions.

“Sometimes you’re taken to ICU, sometimes maternity,” he said. “Some patients have been in bed for so long or are in a coma. You help bathe them, turn them so there’s blood flow.”

Ali says the work is physically and emotionally demanding, especially when supporting patients living with anxiety, depression, schizophrenia or HIV-related stigma. “You’re not supposed to have sympathy for them. You need to have empathy,” he said. “You make them feel like they are part of the community.”

According to him, many caregivers suppress their own emotions while trying to remain strong for the people depending on them.

“Sometimes you want to express how much it’s taking a toll on you, but you really can’t because the person you’re caring for needs more support,” he said. “You can’t go far from them because you feel responsible for them. It locks you in.”

He added that caregiving often requires families to sacrifice work, education, finances and personal time. “People with chronic illnesses need so many things,” he said. “Medicine, diapers, supplements; all those things cost money.”

Despite the challenges, Ali described caregiving as an act of responsibility and compassion. “Today someone is okay, tomorrow they’re not,” he said. “It’s a blessing that you are chosen to take care of someone you love.”

As chronic illnesses continue to rise globally, patients and caregivers say support systems in Kenya still fall short of the realities many families face daily.

For Ali, the solution starts with recognition. He believes caregiving and mental health awareness should be discussed more openly, especially as more families find themselves responsible for caring for sick loved ones at home.

Until the healthcare system bridges the gap between hospital care and home-based support, the true cost of illness will continue to be paid not just in shillings, but in the quiet, exhausted sacrifices of Kenyan families.