PatchSA Ambassador, Huyaam Samuels, explains what receiving palliative care meant to her and how it improved the quality of her life.
As an individual living with a rare life-limiting condition, I realised how cruel specialists could be when presented with something they have never encountered or cannot physically see, such as chronic pain. I became a passionate advocate for palliative care because its significance has been so profound in my life that I wondered ‘what could it do for others?’. Therefore, I made it a personal mission to be a voice speaking out for the benefits and importance of palliative care within the medical sector.
What happened before I found palliative care?
Often various specialist told my mother and I:
“She’s making it up for attention”
“I believe, as a parent, you are overbearing and too protective. There is nothing wrong with your child”
“I chop people up and put them back together. There is nothing wrong with you. You look fine. Get out!”
“You cannot have chronic pain, or any pain, you seem to be fine. You’re laughing and smiling. If you were in so much pain, you would not be doing those things”
These words and so-called professional opinions of various doctors guided my life as a teenager and drove me to a point where I started to think that I would have to accept a life of suffering, not finding a doctor who would believe in my pain levels and constantly having to suffer from joint dislocations. I started to realise that maybe I would not be able to achieve my goals and aspirations in life.
Let’s take a further rewind of my life
Throughout my childhood I was constantly sick, falling over my own feet, having unexplainable pains throughout my body, having to be absent throughout my schooling career – both in primary and high school. My family and I struggled for 7 years to find a doctor who believed in the amount of pain I was experiencing, to realise that I was not making this up to grab attention or because my mother was overprotective but because I was actually suffering and had severe pain! We ended up doing test after test, numerous amounts of x-rays but everything appeared to be normal – nothing was out of the ordinary.
However, this all changed when I was introduced into a world of palliative care, Dr Michelle Meiring and her team at Paedspal. I realised, that if palliative care made such a profound difference in my life, what could it do for others? How many other children could it assist? How many children will not be condemned to live a life filled with suffering, or parent’s not taking their children to see a doctor as they were not taken seriously enough and getting proper medical assistance? If they knew of the benefits of palliative care, many children across South Africa could gain back their quality of life, independence and live a life where they would be able to achieve whatever they would like to!
Life with and after palliative care
Palliative care has done so much for my family and ourselves. It enabled me to be pursue my life and studies while providing curative measures and plans with proper pain management – where I gained the necessary skills and techniques to manage my health efficiently. The palliative care team helped me manage my chronic pain – I was able to be in school more, it provided me with the emotional and social support along with encouraging me not to give up hope or on my dreams. It enabled me to live a normal life and ascertain a quality of life I thought was IMPOSSIBLE.
Looking back, I have accomplished so much through receiving palliative care. I have been able to gain full mobility, reduce my chronic medication, no longer require using any brace support or using a wheelchair. My previous medication regime consisted of high dosages and daily use of morphine and neuropathic medication i.e. Lyrica.
Do I use any of the above today? NO.
Palliative care has enabled me to live using proper pain management techniques, accessing proper psychosocial support and access regular rehabilitation with a trained physiotherapist who focuses upon Chronic Pain – Professor Romy Parker. I have become mentally, physically and emotionally stronger through the services and support levels provided with the multidisciplinary palliative care team. Through palliative care, I have gained back my independence and I am able to live a fruitful life and attend university as a regular student!
We need to change the concept of palliative care being regarded as only for those within end-of-life stages – to any individuals living with a life-threatening or life-limiting condition and to being perceived as the golden but normal standard of health care.