How To Survive Caregiver Burnout

Paying it forward

As I try to overcome survivor's guilt, one upside to life post-transplant is becoming a caregiver to my #SickleCellTribe. I take so much pride in caring for them because, in the past, they were always there for me. Dealing with an unpredictable chronic illness like sickle cell can make you a complex human being because you're steering through a world that doesn't always cater to your health needs.

I have compassion for individuals with sickle cell disease (SCD) because I've lived through disease-related health complications like acute chest syndrome, infection, splenic sequestration, and chronic pain; equipped with firsthand knowledge of the impact this disease has on your mental, emotional, physical, and social health. Ironically, the suffering I endured while living with SCD has prepared me for the role of caregiver.

Learning from my mom

My mother was my primary caregiver and although she did the best she could, including forfeiting a lucrative career so she could stay at home and properly care for me, I didn't always feel understood. Bless her heart – she was resourceful, supportive, dependable, and loving but she struggled with patience and communication.

Everyone agrees that parenting is the hardest job on earth but when you have one chronically ill child and one healthy child, it can alter the family dynamic so she actively tried to be attentive to my brother's needs as she was to mine. At times, it was challenging to find a middle ground but in my pre-teen phase, she found a way to create healthy boundaries so she didn't wear herself out.

Setting healthy boundaries

One scenario I vividly remember was at age 10, she called a family meeting and expressed her distaste for hospital settings. After airing her concerns, a collective decision was made and she shared that she could no longer stay overnight for the entire duration of my hospital stay. At first, I was hurt but I myself can agree that nurses going in and out of a patient's room is a recipe for poor sleep patterns.

I really needed her at my bedside but she was of no use to me when she ran on little to no sleep. Her patience was short, her body was tired, her blood pressure was high, and her positive attitude definitely took a backseat. Establishing that difficult boundary was her way of enforcing self-care and preventing caregiver burnout.

Caregiver, friend, and ally

Taking on the role of a caregiver is a multifaceted endeavor. It involves putting the needs of others before your own, constantly communicating with healthcare providers, having patience when met with opposition, adapting to changing circumstances, focusing on the positive in every situation, and having compassion for the individual dealing with chronic illness.

Caregivers often provide physical and emotional support, which can make all the difference in the world for patients who are battling a chronic illness. The role of a caregiver goes beyond the hospital setting because they are responsible for the individual's continuity of care while at home.

As a caregiver to many sickle cell warriors, my contributions exceed the primary responsibilities of a caregiver, I am also a friend, a spiritual guide/prayer partner, a mental health coach, a pain specialist, a bedside advocate but more importantly, an ally for the patient community, here and abroad. Each role comes with its own unique demands and obligations.

Caregiver stress and burnout

According to John Hopkins Medicine, burnout is a state of physical, emotional, and mental exhaustion. It is a type of emotional exhaustion that is triggered by failure, feeling worn out, or feeling totally used up due to too many demands on one’s energy, strength, and resources.¹

Many caregivers experience varied forms of burnout, for example, trying to cope with their loved one's diagnosis, experiencing financial pressure, unforeseen changes in family dynamics, or a general disruption in family life. Some of the burnout symptoms include a lack of energy, sleep issues, weight loss or gain, anxiety, feelings of hopelessness, irritability, lowered resistance to illness, mood swings, headaches, impatience, uncontrolled crying, and neglect of your own physical and emotional needs.

My experience with burnout

For me, I found that wearing multiple hats to support multiple people started to take a toll on my mental and emotional health evoking feelings of guilt, sadness, and anger. The guilt came from surviving the transplant and getting a cure while the sadness came from a place of empathy and hopelessness because I couldn't take away the excruciating pain they felt.

The anger, however, stemmed from the mistreatment of sickle cell patients as inpatients and outpatients. The medical community has falsely accused and labeled SCD patients as drug-seekers in the midst of the opioid epidemic, even though the stats say otherwise.

Getting past it

A pro tip that I share with other caregivers is to give yourself permission to take breaks and know when and how to ask for help. Wanting more help doesn't make you selfish or a bad caregiver, it simply means you recognize that you cannot do things alone. People want to help, especially during hard times, so delegate/hand off difficult tasks and activities.

My mother would always say to me "Wunmi, I can't pour from an empty glass so if you want me to properly care for you, I have to take care of me too," her words ring true even today. Self-care is not selfish, it is simply a priority. Each morning, she would plan to wake up 30 mins before everyone else to meditate, pray, and stretch, always seeking to protect her peace of mind and body.