by Rita De Michele
I’ve developed a strong inner calling over the years to help break down the stigma that prevents so many people from talking about what they're experiencing with their health. It usually comes down to the fear of being labelled: a hypochondriac; an attention or sympathy seeker; a catastrophiser or whinger. I’m sure, you get the picture!
The growing popularity of storytelling on social media and the internet has made great strides in the right direction and yet on the ground level where a lot of people suffer in silence, we still have a way to go.
I have spent years battling my way through the health system as an advocate for myself, my son, my mother, and most recently my husband.
I wake up energised every day in the mission to encourage people to feel safe and empowered to share their health and well-being concerns and wins. The successful transfer of information between people has to have two things at its core; the courage to be open and vulnerable and the emotional stillness to hold space and listen.
My husband’s recent health episode, has cemented my belief in the impotence of the growing trend for the sharing of information, stories and our personal experiences of being a carer or health advocate for a loved one or for oneself.
My husband was put on several strong painkillers for nerve pain after his operation. He was dealing with so much pain that he didn’t give much attention to the fact his vision had become slightly blurry. Once home, after spending five weeks in hospital, his vision continued to worsen with increasing blurriness, double vision, and nausea, accompanied by intense headaches.
Two weeks after being discharged he was back in the hospital emergency department being scanned for a possible stroke or to check if the Streptococcus B infection that had originally put him in the hospital may have been in the brain stem. A week of scanning showed nothing definitive or sinister which was great news, but we were left without any answers as to why he was experiencing these symptoms. He was sent home with an eye patch and an appointment to be reviewed in six months' time.
Around the same time, I was speaking to my mother’s carer, for whom sharing what ails you is a natural part of the conversation from her generation and cultural background. She told me how she was in terrible pain, she wanted her usual strong painkiller but her doctor was now refusing to prescribe it, due to the side effects. I was taken aback to hear it was the same painkiller my husband was on.
I googled the Mayo Clinic’s website for the side effects of this particular medication and bingo! The symptoms he was experiencing were listed. During our next Doctor’s appointment, I advocated for him to have this medication stopped and a full review done.
There can be resistance to these requests from medical professionals, because they may say “I’ve prescribed it for years and it’s worked well for so many people”. After discontinuing this pain killer, his eyesight has now improved dramatically.
Everyone has individual health needs and responses to pharmaceuticals and supplements, and by speaking up we can help to create change within traditional healthcare for a personalised approach to wellness.
The moral of this story: is that sharing a snippet of information, speaking up for your rights, advocating for your health or by seeking a personalised care plan, could not only help you but also be incredibly helpful to another person. The other side of the coin is that even in our hurried lives, if we can find the space to pause and listen to another’s story, we might stumble on the answer we’re looking for.
To become an effective self-advocate, I would recommend the following five tips:
know yourself
know your needs
know how to get what you need
believe in your rights
never give up
Being heard and supported starts here.
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Note: Rita does not make decisions or give medical advice to the patients or their support persons. Always refer to your healthcare provider.
RITA DE MICHELE COACHING
FOUNDER OF ONUS
OUR LIFE IS ON US
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