Rare Disease, COVID-19 and the Need for Mental Health Coaching

In one way or another, the pandemic has impacted nearly everyone on the planet.  But some groups have suffered more than others.  Because COVID-19 preys on those with underlying health conditions, people with rare diseases have had to take extraordinary precautions to avoid contracting the illness. The threat of becoming infected has added tremendous stress to the already challenging lives of these families.

When we look at global maps showing the number of COVID-19 cases in each region, what we don’t see is the less-visible mental health scars inflicted on those with chronic health conditions. Here is a typical insight on life on the COVID era from a mother of two who is currently self-isolating:

“It has been really tough, I went into isolation 2 weeks before the initial lockdown. My anxiety levels have not been helped by the numerous letters, emails and texts I am receiving telling me the risks and how I must stay in isolation not venturing outdoors. I am struggling at the moment to keep up a brave face for my family not letting them see how this is affecting me….I feel very alone.”

Mental Health and Chronic Illness  

People suffering with chronic illness have a greater risk of mental health issues that negatively affect how they think, feel and behave.  Depression is one of the most common complications, with up to one third of individuals with a serious medical condition experiencing symptoms. According to the National Institute of Mental Health, when a person has both depression and a chronic illness, they experience more severe symptoms of both.

The impact of COVID-19 amplifies this risk, depriving people of support networks and coping mechanisms.  There is a clear need to provide support for this vulnerable population and ensure they have the tools, support and resources to navigate their mental well-being. 

Bridging the Gap with Mental Health Coaching 

Improving outcomes for people with rare disease and other chronic conditions requires attending to their emotional needs as well as their physical needs. RareiTi’s model includes Evolve-Care coaching to provide the support, insight and motivation needed to enable people to make practical (and often small) changes to day-to-day habits, routines and activities in order to improve mind-set and achieve health goals. The client sets the pace and determines their own road map, working in partnership with their coach.

A systematic review of Health Coaching on adult patients with chronic diseases has shown that the coaching process:

  • Produces positive effects on chronically ill patient’s lives
  • Motivates changes in lifestyle behaviour
  • Improves physical and mental health status

Impact of Coaching

Particularly during times of change, like the one we’re experiencing currently, people need a level of certainty, control and connectedness in order to maintain a positive and healthy mind-set. Without this we can feel increasingly lethargic and/or angry, unable to make decisions and isolated.

Coaching helps people to acknowledge what has changed, explore ways to adapt, create some certainty and control – all the while creating a connection and partnership with a coach.  It can be conducted effectively and safely over the telephone or through video-conferencing, relieving the stress experienced by rare disease patients who are self-isolating and helping them get the best outcomes, now and in the future.  

Dr. Olivia Kessel
Dr. Olivia Kessel is a medical doctor with a bachelor of arts in psychology
and an honorary professorship in patient centric design. She sits on the
advisory board of RareiTi and is founder of Evolve Care, www.evolve-
care.com
, which empowers people and those who care for them to take
charge of their well-being one step at a time. For more information contact
olivia.kessel@evolve-care.com.

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