What depression feels like for us…

In their own words, these PHA UK members describe their experiences of living with depression or low mood with pulmonary hypertension.

I have been struggling with severe depression since my twenties, and I am now 50. For me, it causes a general lack of motivation and energy. Everything is a struggle. Since being diagnosed with PH all of these feelings have increased ten-fold. The struggle and lack of motivation is now as much a physical problem as it was a mental one.

The thing that saved me [from my depression] was palliative care. My local hospice were just starting up their outpatient activities after covid and I was referred there, and as well as meeting some wonderful people, they did exercise classes, and other activities that I could join in with. Getting out of the house and speaking to other people has been a lifeline.

I’ve had CBT [Cognitive Behavioural Therapy]and I think it did help. It taught me to rest when needed and don’t overdo things on good days. I just feel like no-one understands, especially as I’m up and down with good days and bad.

I think mine was a mixture of depression and PTSD [Post-Traumatic Stress Disorder] following diagnosis of PH in 2013. At the time there wasn’t much help/ information at hand so I more or less went into a state of denial as a method of coping.

It was only when I started to have challenges at work and difficulties at home did the dark spells really manifest… profound guilt and darkness, difficulty to look forward or enjoy current moments of happiness, like the birth of my daughter. I wouldn’t say it was purely down to PH. I had death in the family, and a toxic job and relationship, but it definitely had an impact on resiliency. I still have moments of darkness but I’m more aware of the triggers and the ways to combat it.

On a bad day I feel pretty useless and worthless. I feel frustrated by my conditions but know this will be short lived. I try to write off the day and tell myself: ‘Tomorrow is a new day, all will be well’. I had a telephone consultation with my GP [about my feelings of depression] and I decided I would practice mindfulness, and I have also returned to art which has been my saviour. Added to this I am lucky to have family who are extremely supportive.

If you need help now…

The following organisations specialise in support for mental health difficulties or emotional distress, and they can be contacted in the following ways:

SAMARITANS

116 123 (24 hours a day) jo@samaritans.org

MIND

My depression affected many aspects of my life: My work and business, my relationships, my self-care, my overall health, my outlooks, my behaviour, and my trust in medical professionals.

0300 123 3393 (9am-6pm, Monday-Friday)

DEPRESSION UK info@depressionuk.org

ANXIETY UK 03444 775 774 (9.30am-5.30pm, Monday-Friday)

I tried many medications to try and control my depression and anxiety but had bad reactions to most. I have found podcasts, music and breathing exercises have helped me. I’m not over it, not by a long shot, but I’m working slowly every day to overcome the fear. I would ask anyone with PH that starts to feel down to seek help immediately as although it’s a very misunderstood disease, we are not alone.

Thoughts of self-harm and suicide can be common signs of depression. If you start to experience any of these symptoms, please speak to a healthcare professional as soon as possible.

If you live in England, you can find your local NHS urgent mental health helpline number by visiting www.bit.ly/localhelpline