This page is undergoing construction so please check in from time to time to see our updates. Editor
Welcome to the new pages of our Lifestyle Series - Express Yourself 2 Better Health! Learning to live well with PH.
In 2018 our Board of Management discussed the impact that living with a chronic disease has not only with your health, but emotionally, physically, spiritually and mentally. In this fast paced world people with chronic illness are often left behind. Meanwhile the mental health system is overwhelmed with people trying to access assistance to help them cope. PHNA will be dedicating itself to trying to help improve this area for our PH community, both patients, carers and family members who are affected by someone living with pulmonary hypertension. We will be working with many other organisations and individuals in our quest to bring you resources, interactive mini bites in the form of short films, reading material, information and exercises.
Our approach will be from a "patient centred approach", not a "medical model approach". This is something we are hoping to try to introduce in general to help change the approach for how people living with PH are handled by the medical profession. We will provide you with studies and statistics that show a patient centred approach, inclusive or the patient and carers, makes for a much happier outcome for all. This includes feeling more empowered, greater confidence, and a feeling of well being. We cannot wait to start sharing information with you and I look forward to introducing you to our two Coordinators Education & Development, Helen and Jim Blanchard. So stay tuned for more and in the meantime scroll down and enjoy the new additions we will be making to help you to start off your very own virtual "Mental Health Toolkit". (If you are not online please contact us for a hardcopy). Editor
An exercise in self confidence.
One of the things I’ve noticed as someone living with pulmonary hypertension, is how much my body image has changed. It was challenging before I got sick, but now I have new and unusual additions such as wearing oxygen, and being attached to a permanent medicine pump with tubing coming directly out of my chest.
It would be really easy to hide away at home, and initially that’s what I did. Every time I ventured out people would stare at me, make comments such as “you’re so brave to be out in public”, even pat me gently on the arm. All well intended and coming from a place of human compassion. But then there were the people who actually tried to touch my chest where the tubing comes out, shudder, screw up their faces and make very personal comments like, “what have you done to yourself”, somehow implying that this situation was of my own making.
Words are are very powerful and they can have many different types of effect on you, for different reasons, depending on your individual life experience. If you’ve ever experienced bullying, low self esteem or child abuse, these words can paralyse you. It’s not enough that you are trying to cope with a new chronic progressive illness and a massive change in body image, but now you have to deal with insensitive or ignorant comments too.
Most of of us have heard of self affirmations. "Self talk" can definitely take up a lot of your thinking time, both negative or positive, generally with a slant to the negative... They say “you are what you think”, so we would like to introduce you to our first confidence building exercise, “Mirror Mirror on the wall”.
We are already really well practiced at being critical of ourselves, so let’s turn the tables and try this for a change. Your super power is that you are unique, you are you, there’s only one of you, a limited edition if you like. In a world that can be so exhausting and self critical, try building your new mental health tool kit by starting with this exercise. Editor
Some of my personal examples as as person living with PH, are as follows: