When your physical disability impacts your mental health
katybaker
Member Posts: 7 Listener
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!
Replies
Thank you for sharing your experiences with us and for your inspiring and knowledgeable insight. I agree I think there needs to be more research into rare conditions as well as better understanding about how physical disability can affect mental health. I know that my disability has affected my mental health, particularly in my teenage years. I am now exploring the possibility of going into schools to talk about disability and the importance of recognising mental health. I am also keen to promote that disability or chronic illnesses do not have to define a person so I share in your words about determination and motivation. Please my I ask what are you studying at university? Thank you
TK
I do wish you the best.
TK
Congratulations on your BA in Childhood and Youth and I wish you the best of luck with your studies at Oxford Brooks. Thank you.
If you are in a council property you will be able to make a complaint to the housing association. It also shows the steps if you are unsuccessful.
I'm concerned by your mention of suicide and want to support you.
You can call Samaritians on 116 123 to be in touch with a crisis volunteer. Also, SHOUT have a similar service which is mental health support over text. If you text SHOUT to 85258 a crisis volunteer will be in touch.
MIND also have guidance on how to manage suicidal thoughts.
If you feel that you may be an immediate danger to yourself, please call 999 or go to your local hospital right away.
If you haven't already, please do seek a second opinion from another GP. You deserve to be heard.
Scope community team
I just wanted to say that I hope your situation improves very soon, I'm so sorry to hear what you are going through but I can promise you that you're valued on this community. This can be a safe space, everyone here is so kind and supportive.
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Scope community team
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