(This feature first appeared in the March 2019 issue of CF Life magazine)
Getting to the root of the problem
People with CF usually have many years’ experience
of coping with the demands of their condition, and
while some people say that living with its challenges
has made them emotionally resilient and helped them
to develop impressive coping strategies, for others
these huge challenges can feel too great.
Michael (pictured right) found that a drop in his physical health
had a knock-on effect on his mental health
when he contracted Mycobacterium abscessus.
He says: “Having CF never affected me mentally
until I was 18 when I was diagnosed with
Mycobacterium abscessus, which resulted in my
lung function dropping from approximately 96% to
around 20% in just over a year.
“I spent two years of treatment getting my lung
function back above 50%, where I still have it now.
I do still get depression as a result of this and the
lengthy treatment that I underwent, but I try to be
as positive as possible and won’t ever let CF define
or beat me.”
Searching for support
CF psychologists support adults with CF in a number
of ways; you might meet them during your annual
review or be put in contact with them if you are having
problems with your mental health.
Adult CF psychologist Helen says: “Adult CF teams have their
own psychologists because we know that living with
CF can be a challenge to emotional health at times.
Seeking help at these times is a positive action that can
help prevent problems getting worse. CF psychologists
can then use a variety of therapy approaches to help
you manage life with CF, whether you’re experiencing
more common issues like low mood or anxiety, or
difficulties coping with health issues or treatments.”
Often, help can be available within the CF team
– many CF centres now have a social worker or
psychologist who will have a good understanding of
the psychological impact of cystic fibrosis. If a centre
does not have these staff, they might put someone with
CF in contact with their local GP service, who would be
able to offer psychological support.
Ellie (pictured left) spoke to her CF team at the Bristol Royal
Infirmary, who then helped her to organise
counselling sessions nearer to her.
“This really helps, having connections in Bristol
and in my home town. The CF team at Bristol
have given me coping techniques for when I feel
nervous, which has always helped me face leaving
hospital. They have also always explained to my
employers when I have found it hard to talk about
my condition or when employers don’t understand
me, which triggers my anxiety. I can’t thank them
While we often think of mental health as an ‘adult
issue’, it’s also something that can affect young
people with CF, though the emotional issues they
experience might be very different to those of adults
with the condition.
One of the biggest difficulties
facing children, especially when they reach school
age, can be feeling different to their friends, as
paediatric CF psychologist Mandy explains
“It is important that children with CF see themselves
as ‘a normal child who happens to have CF’, rather
than ‘a child with CF who is trying to be normal’.”
Unlike their friends, children with CF might need
to take time off school for hospital admissions or
take regular medication, and worries about these
differences can cause them to feel embarrassed by
their condition and even to hide it.
Mandy says: “One of the most common emotional
issues for young children is to learn their diagnosis,
understand how CF affects them and to ensure they
have an appropriate perspective on living with
In many cases, however, emotional problems might
have nothing to do with CF at all. What makes
children and adolescents different from adults, is
that they might not always be good at saying how
they are feeling, perhaps because they have never
experienced these emotions before or because
they are too young to put their feelings into words.
Having the support of their families, as well as a
psychologist or social worker as part of their routine
care, can help to identify issues quickly and even
Receiving a diagnosis of CF can be an incredibly
challenging time for parents, where perfectly natural
fears for what the future holds and concerns for
their child might arise. Soon after families receive
a CF diagnosis, CF psychologists can meet with
parents and, if required, other family members, to
discuss concerns and offer a listening ear. They can
also help parents to think about who they want to
tell about their child’s diagnosis and how they will
manage treatments and, importantly, help them to
understand the huge amount of information that they
have been given about their child’s diagnosis.
Cystic fibrosis psychologists have a wide knowledge
of CF and will be able to inform parents about what
it’s like for a child growing up with CF and how to
answer questions their child might have in the future,
as well as any questions that other children in the
family might have.
There's no physical without the mental
Whatever your experiences are of seeking
help with your mental health, it is important to
remember that this help is not only there for
when you feel you are in ‘crisis’. Your CF team is
there to help you no matter how big or small your
problem is, and it is important that you treat your
mental health in the same way as you would your
physical health; by taking the relevant steps to
keep yourself well.
Nubi (pictured right) said: “I am so glad I now regularly see a
psychologist as it has given me the tools to be
able to deal with the good, the bad and the ugly
times! I always say you cannot have the physical
without the mental. I would encourage anybody
to seek a psychologist if they are wondering
about it already. Mental health is a part of CF
that often goes unnoticed, so let’s do more to get
If you have any questions or concerns around mental health, speak to your CF team or GP.