Becoming a Patient
As the conversation goes between Ross and Rachel in ‘Friends’ —
Rachel: “You don’t expect doctors to get sick.”
Ross: “…But we do.”
Now, I’m no doctor, but working in the healthcare coms industry gave me a lot of confidence in my own knowledge. However, when I recently became seriously ill and ended up in hospital this confidence disappeared.
Being a patient was a new experience for me, and it was daunting. I was taken into hospital with severe stomach pain and was diagnosed with sepsis, acute pancreatitis along with an unknown chronic stomach issue (which continues to be ‘unknown’). I needed abdominal x-rays, an ultrasound, an MRCP, an endoscopy, a HIDA scan, biopsies taken, bloods upon bloods plus a lot of antibiotics. It was mind-boggling.
I started off feeling in control of what was going on. “I know why I am having an x-ray, I mustn’t forget to ask what that blood test was for, I’m getting used to my antibiotics routine and I understand why I am taking them.” But that feeling of control rapidly faded and turned into a sense of worry: “What is an MRCP, is that a type of MRI? What’s this test for, what is the name of that test again? I’ll just Google it.” ’DEATH’ and ’CANCER’ were always top of the search engine results, not what you want to read when you haven’t got a diagnosis. Add more and more tests and the flow of medical jargon continued. I began to feel lost and out of my depth, add morphine to the situation and total confusion ensued.
There is no getting away from the fact that the healthcare professionals (HCPs) use medical language day in and day out and sometimes genuinely forget that patients don’t always understand it. I was extremely thankful for one of the nurses who took the time to read his little piece of paper to me, telling me what tests I was waiting for and what they meant, and having work colleagues I could lean on to explain in simple terms what I needed to know. Not everyone is so lucky.
It seems ridiculous to say, but it really is amazing how different you feel when you understand what is happening around you and to you. The sense of relief, being able to mentally prepare for the situation and knowing the potential outcomes. I suppose it’s the same as being in a foreign country, not knowing the language and or where you are and then finding a translation app.
So, here are my top tips, patient to patient, to help understand the HCPs and get the information you need clearly and easily:
- Do not Google! This doesn’t always give you an accurate answer and can sometimes terrify you more
- Speak up when you don’t understand all the medical jargon, ask for it to be explained as many times as it takes until it is clear
- Ask if a family member can be present when having discussions about your illness/treatment
- Ask if you can record your conversations — this massively helped me when I had just woken up or been given morphine, as I found it difficult to remember everything that I had been told
- Nurses are also a great source of information — they have access to your medical notes and I found they are always willing to help
- Get a copy of your results — this allowed me to ask questions and reflect on what I had been told and pose more questions going forward
- Most of all, do not be scared to ask questions — get a notepad and pen and write them down as you think of them, this way you won’t forget!
It is scary enough being in hospital and not knowing why your body isn’t in tip-top shape, (not just for you but for your family and friends too) so the more questions you ask and the more you understand about your illness and treatment going forward, the easier it is for everyone involved.