My name is Katy, I'm
23 years old and I have Scimitar Syndrome. It is a congenital heart defect and
due to the heart anatomy being a bit tangled up, there is no oxygenated blood
going to my right lung. Therefore, my right lung does not work and I have a
reduced lung function.
Research is needed
Two years ago I started to struggle with my mental health.
This was due to the uncertainty over my rare condition and how I am different
to others. I believe addressing poor mental health that has been triggered by
illness or disability is important. We need to raise awareness of it and ensure
people can get the right support.
I really believe that research into rare diseases is vital
and not just how a person’s physical health can be affected but how their
mental health is impacted too. If medical professionals can be given more knowledge
on rare diseases their patients will be more at ease as they will be able to
receive more advice to manage their condition. Chronic illness can trigger so
many emotions and feelings. This can include dealing with your chronic illness
day in, day out but also the environment you’re in, as well as the other
aspects that come from it such as guilt or loneliness.
Navigating life with a chronic illness
Since I started university, I have found it increasingly
difficult to tell people about the illness I have. I do not mind friends and
other non-medical professionals asking me to explain what it is, but their
reaction or answer can really change the level of trust or how much I feel
reassured by them.
You feel vulnerable enough with a rare disease or chronic
illness in hospital, often expecting professionals to not know what your
condition is. Yet when they look at you and are confused or do not try to do
research, it can really trigger some anxiety. I do not want them to lie and
pretend they know what it is, but I want to be reassured they are willing to
find out the necessary information. Reassurance at these worrying times is
exactly what we need.
My mental health journey
I was diagnosed with mixed anxiety and depression two years
ago and have been taking antidepressant medication and receiving therapy ever
since. We talk regularly about how I feel like I am the doctor and how medical
professionals are learning from me. I appreciate it’s the case for so many rare
disease patients but when you are unwell and need help we wish health
professionals had the knowledge. Rare diseases may not affect many people, but they
affect every aspect of your life when you do have one.
As well as talking about how I am with my own doctor, we
also talk about how there is no cure for my heart condition – a harsh reality.
I think most people’s mental health would be affected by this news. Combine
this with the normally stresses of life and it’s not surprising people with a
chronic illness feel they need mental health support.
I do not want people to feel sorry for me. I want people to allow me to tell my
story – to educate and teach them about the side of illness they don’t know
about. Determination to achieve and motivation to keep going is so important,
grab every opportunity and you will go far!
Has your physical health impacted your mental health? Do
you think there should be more mental health support for disabled people? Let
us know in the comments below!
