I remember hearing the words when I was told I had PV, even now 11 years later. Denial struck through me. I was diagnosed late into my pregnancy and I didn’t (nor want to) spend too much time researching what PV was or how it affected the body, I just wanted to ignore it. But now I use my research to empower my decisions and conversations in order to get the best care. This is how I do it.
I can often struggle emotionally with my diagnosis. I remember first being on the ward for a venesection; I was surrounded by people who were visibly unwell, and yet I was going back home that day to be a mum and cook the tea or go to work the next day. PV is a rare condition that more often than not affects men in their sixties, not like me, a new 33 year old mum of two.
I decided my diagnosis would not control my life. After my maternity leave ended, I went back to work full time and decided to take ownership of my PV. What does it mean to have PV? What did I need to know?
I take pride in knowing my own body. I might look okay on paper, but how I actually feel might be a completely different story. I knew what my body needed and what it was asking for. I knew this better than anyone; the same way you know your own body and health. So why did I feel like I had to challenge my own healthcare professionals to be heard?
Sometimes all we need is to just talk about our health. I don’t need people to get a violin out for me, but I do want empathy and understanding. Last time I was just over target from needing a pint of blood and I was told I would be OK, but I knew that I needed it, my body was telling me even though the figures might not have been reflecting it. So, I did have a venesection a few weeks later. They didn’t get the point; the fact that I really, really needed it. That’s where the advocating can come from.
I have often been told to ring in when I have any issues, but there have also been times I have been made to feel like the world’s biggest worry pot. Personally, I struggle to strike the balance between how to handle what I’m going through. But, when I do challenge my healthcare professionals, I also seem to get pushed back. Sometimes we need to look at the effects holistically, rather than medically.
Of course, we don’t want to challenge our healthcare professionals; they’ve spent years training in our medical care and it’s their passion. But I worry for the patients who haven’t got the research or knowledge. What does their care look like?
The confidence to push back or ask questions doesn’t always come naturally or quickly; it takes time to build. But when you do, you know you’re advocating for your best care and it is empowering to be able to do that.
My mum empowered me to equip myself with knowledge. She was diagnosed with chronic lymphocytic leukaemia (CLL) just a year before I received my diagnosis.
She has a great piece of advice for appointments. Imagine you were sitting in that appointment room for your child or your loved one? Would you push back more? Most often not, the answer is yes. We should treat ourselves with the same regard; we deserve good care and we should stand up for ourselves to get it.
My top tips when you want to feel equipped to advocate for your healthcare:
- Bring a second pair of ears to your appointment. It can be tricky to take in lots of information, so a trusted loved one can help catch the bits you might miss!
- Be prepared. Write down questions before you arrive at your appointment so you don’t forget to ask things that may have been playing on your mind.
- Don’t agree with what a medical professional is telling you? Consider a second opinion; it’s definitely something that has helped me advocate for myself. Speak to Leukaemia Care’s Advocacy Officer about getting a second opinion to help bridge the gap between you and your healthcare provider. Call them on 08088 010 444 or message them on WhatsApp on 07500 068 065.
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