When your physical disability impacts your mental health

katybaker

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!

WestHam06

Hi @katybaker, 
                         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

katybaker

Hi @WestHam06, thank you for your kind words about my post! I graduated in 2018 with a BA honestly Childhood and Youth from Northampton and I’m starting an MSc in psychology this September at Oxford Brookes 

Wini1960

katybaker Hi I think you are a real trooper. Its indeed hard when you have a physical problem that impacts your mental health. I felt lost when I got the news I have to take warfarin for the rest of my life because my blood viscosity is poor and it's easy for me to form blood clots both in my lungs and in my vein. I meditate a lot. I help my husband with our at home business and do what I can around the house as I'm in a lot of pain from sacrilitus and degenative lumbar spine. I am so encouraged by what you have said I wish you all the best. Well done.

katybaker

Hi @Wini1960 I’m so glad you could relate to some parts of my article and thank you for sharing what helps you keep in a positive mindset. I wish you all the best with your health.

Wini1960

katybaker Thank you?

Topkitten

I know how it feels to have a rare disease or condition, from what I have been told no doctor (specialist or otherwise) has ever heard of another case like mine and when I was under the Pain Clinic not only had they never heard of it nor had a number of other Pain Clinics around the country. This sort of situation leaves a person in a constant state of having to explain and justify why they are ill. My condition doesn't even have a name so I am forced to explain it each and every time. Mental health suffers when a person is doubted so often and it just piles on and on as the years go by. It gets to where you start to feel that if one more person asks me why I'm ill...........

TK

PattiDarling

This is another area I desperately need help with but social workers keep doing care needs assessments copying the last which always omit most of my disabilities medical problems and the stress anxiety cycle which brings on some of the unmentioned heart and physical problems; say I have no goals and state that my conditions have made no difference to my life or my mental wellbeing. I have just been discharged for the 26th time  to a house which thry refused to safety check before sending me here. Iwas evicted from Walsgrave Nov. 21st last year to rat infestation and no food or care package. Electricity hwd gone while I was in hospital so fridge and freezer were full of rotting food; all kitchen cupboards stank of rats and were liberally sprinkled with faeces and everything soaked in so much urine that tins and jars were stuck to the shelves and all packets etc were chewed into but were all there was to eat.rats ran over me when I fell and climbed onto my bed. as fast as I bought food I had to eat it before they took it to their nests. I had to find care help to get me breakfast and dinner and clothing for day and night. One evening I left my meal half eaten to go to the toilet and came back to see a massive rat sitting on my plate helping himself. Social services refused to help and left me unable to look after myself trapped  in these conditions unable to get out even into the garden for fresh air and human contact. I've been stuck in this small space for for 8months now and have tried to kill myself 5 times to make it all stop. But they still won't get me counselling or help me get to therapy sessions or out into the community. The Crisis Team told me to stop phoning them because there's nothing wrong with me so I self harm to stop me from doing something worse.

Topkitten

@PattiDarling, I am so gobsmacked that I cannot think of anything to say that might help. I know that Social Service departments are usually unhelpful and even bad but this is beyond belief. I'll try to think of something helpful later, if I can, but please don't bank on it as it's so desperate I cannot think of anything right now and that may not change.

I do wish you the best.

TK

JJackson1

Hi Katy I hope you get well soo

katybaker

Hi @Topkitten, sorry to hear about the barriers you have faced with a rare illness. Rare disease actually affects 1 in 17 so they are not that rare! Thank you for sharing some of your story too and fingers crossed for more research in this area in the future!

katybaker

Hi @PattiDarling, thank you for sharing some of your experiences but also some of the struggles you have been facing too. I hope you are able to source some other support.

katybaker

Hi @JJackson1, thank you. Hope you are doing ok.

christian96

Thanks for sharing your story with us @katybaker!

JJackson1

@katybaker hi how are you doing today

PattiDarling

depressed as hell. Still trapped indoors 

PattiDarling

thanks for the good wishes and positive energies they inspire. I'm still struggling with the bitty lay out of this site I f anyone would like to pick me up on F.B or LinkedIn which are much easier  on the eyes, [removed by moderator - social media profiles can't be shared on the forum] and an upbeat character as I was before this happened

JJackson1

Ok

WestHam06

Hi @katybaker, 
                        Congratulations on your BA in Childhood and Youth and I wish you the best of luck with your studies at Oxford Brooks. Thank you.  

Wini1960

PattiDarling Hi will look you up on FB❤

Chloe_Alumni

Hi @PattiDarling, I'm incredibly sorry to hear about your current situation. It sounds like it has been incredibly difficult. Are you currently in the same living situation?

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.