On a few occasions my dad has told me how I know my body better than anyone and have been right almost every time something has been wrong with it. The most recent example being my ruptured cysts – I knew at least one had gone pop but no one seemed to believe me until my consultants ultrasound showed a gigantic one had done just that.
It has occurred to me over the years, that despite the fact you are the one living in a semi-broken body with all its symptoms, healthcare professionals like to take their time to a) believe you, and b) do something about it.
Thinking back, it is almost crazy how many times I flagged up my symptoms and possible diagnosis’ to GPs and consultants, only to have them pushed aside, and it’s only when I have looked back that I’ve realised how much they missed.
I went to my GP so many times complaining of super heavy and painful periods before I was formally diagnosed with Endometriosis. At the time, I hadn’t even heard of the disease so I was in no way pushing to be diagnosed with it. But each time I was dismissed and told it was “womens problems” or that my pill wasn’t “strong enough” (is that even possible?). What they should have seen was a university student struggling to manage her periods because of those symptoms – even missing university or placement – instead of sending her away with these forced ideas of “normal”. I reckon that I first went to a GP about abnormal menstrual symptoms when I was probably 15 or 16, meaning I have had a massive delay in getting any help for it.
Before my second laparoscopy, I knew my Endometriosis had grown back, but I had to ask and ask my consultant to have another look, almost like I was having to persuade him. And you know what? I had been right. I had even been right down to the location and side – I remember on the morning of my operation my consultant came down to see me and I again repeated how it was my left side that was the problem, how I knew something was on my left ovary. He even went as far as to chuckle at me, telling me how he didn’t think he would find anything. And you can guess who came to my bedside apologising over and over again after the surgery when my suspicions had been right.
I’ve had phone consultations with GPs who don’t believe I have a UTI, almost to the point that coming in to see them was deemed “not necessary”, only for them to check my urine and be proven wrong. I even had to beg a paramedic to take me into hospital when I knew one particular infection wasn’t that simple, but my begging paid off when I was diagnosed with sepsis.
The point I’m trying to make is that we know our bodies better than anyone else. We are the ones who live with the diseases and their symptoms, so we can be the only people to know when something has changed or something is not right. The “diagnosis” of PCOS (it’s only in quotation marks because I won’t have a definitive answer until I see my consultant in a few weeks) is a good example of this – I recognised a change to my menstrual symptoms, my skin and my hair and it was just on the off chance I mentioned my skin to my consultant that she picked up what I was thinking.
I think it’s an amazing skill to have to be honest, because it enables us to make sure we stay as healthy as possible, have an active role in treatment and make changes as needed. But unfortunately it is something that many healthcare professionals don’t understand – they have their medical degree and all their training, and often forget that we are the patients living with it and they aren’t reading something straight out of a textbook.
There was an amazing quote I saw on social media a while back;
Don’t you think this is so true?
Most primary healthcare professionals, such as GPs and practice nurses, haven’t even heard of some of my conditions (Interstitial Cystitis being the most common) and the others aren’t even that well educated on them. Sure, you’ll get that one diamond of a GP who astounds you every time you visit, with their in-depth knowledge, understanding and compassion, but that’s a luxury not all of us have.
Take A&E for example – if you go to A&E one day or night because you’re having some strange symptoms or a major flare up, how likely are you to get a doctor or consultant who knows and understands what you’re going through? The answer is very unlikely. In fact, in most A&E departments you’ll see a terrified junior doctor before you get anywhere close to a specialist (e.g. urologist, cardiologist), and personally I think that’s even worse – they’ll have their senior breathing down their neck and even if they are on the same page as you, chances are is that their senior will snap them out of it and you’ll be sent home.
Really, seeing as we know our bodies better than anyone, we should feel ok with making a bit of a fuss and making our point to enable us to be taken seriously. I’m not saying this is the really right thing to do, because we shouldn’t have to make an effort to be taken seriously in the first place, but sometimes it’s the only way. I’m in no way saying that we should be kicking and screaming and abusing health staff, so remember to still be pleasant, but you can stand your ground.
So next time you are at a GP appointment or consultant follow up, and you’re explaining how unwell you’re feeling, how you’re symptoms have changed or something new has developed, and they are just not listening, make sure you let them know that you know your body inside out because you are the one living with it.