Why Hasn’t Receiving a Diagnosis Changed My Doctor’s Opinion on My Health?

This week I wanted to talk about a topic that has bothered me for a long time, which has recently been re-ignited – My doctor (GP) believing there is nothing significantly wrong with me despite several diagnoses.

Let me start off by saying I think GP’s get a lot of stick which a lot of time is unwarranted. GP’s are generalists, they cannot be expected to know everything about every condition going hence the need for specialists. Saying that in my opinion they still have a duty of care to listen to patients concerns, and I naively believed once you received a diagnosis and had a specialist saying there was something wrong ,they would listen more .. or not.

I was gaslighted by many a GP for several years before receiving any of my diagnoses. This constant barrage of being told I was stressed, depressed, anxious and just frankly over the top. Every appointment I attended I was made to believe I was time-wasting. Until one day I went to a neurologist and received diagnosis number one. Then several years later saw a rheumatologist and received diagnosis two. A year later another neurologist for diagnosis three. Another year diagnosis four and finally 18 months ago another rheumatologist for diagnosis number five. Five separate diagnoses for five separate conditions made by five separate specialists and my GP never batted an eyelid.

To this day my GPs still refer to my symptoms as nothing to be concerned about. My conditions as low level diseases, and any query I have about them is quickly dismissed. I have even had GPs disregard what specialists have told me claiming it isn’t as bad as it has been painted. If this wasn’t enough, they ignore my constant irregular blood results and fail to monitor me on my medication – but why?

This last week alone I had symptoms that bothered me which I had to request blood tests for, because my GP hadn’t been monitoring me. That didn’t bother me because what’s makes me special? I am no more important than the next person in the queue. What bothered me though, is the fact my bloods were abnormal and no-one bothered to tell me, or check my medication, and that’s what I struggle with – why it doesn’t matter. Why it doesn’t matter when they have it all over my notes I am living with multiple conditions, and that I am being investigated for another condition for which things like blood results are important.

Is it because they are too busy? Is it because I live with invisible illnesses and therefore don’t look ill? Is it because I am not their ideology of an unwell person? Is it because they are still holding on to their misconceptions of me before my diagnoses? Or is it because in their great handbook of conditions they simply don’t view mine as important?

I don’t know what I thought would happen once I was diagnosed, but a bit of respect would be nice. I might even push the boat out and say I thought I might start being believed, but maybe that is too much of an ask. Being diagnosed hasn’t changed anything in my doctors’ eyes, in fact in some ways it has made the gaslighting worse. Because by having diagnoses my doctors cling onto them whenever new symptoms are experienced, and explain away anything new as part and parcel of what I already have. This would be fine of course if these new symptoms were just that – part of my other conditions – but it was this dismissive behaviour that meant my latest condition was missed. It felt like being a thirty something year old they refused to believe I can have multiple things wrong. But guess what I can and I do, just like many others.

People don’t choose to be ill, and age isn’t a factor when it comes to becoming ill which is why chronic illness discrimination in people under the age of 50 has to stop. Chronic illness can occur in any person at any time in their lives and GPs need to understand this. Being young doesn’t make you less susceptible to illness, less likely with to develop certain conditions maybe, but age doesn’t make you immune.

Maybe the crux of the problem is not just age, but chronic illness in general. Maybe too many a doctor has been told to read the ‘self-manage’ riot act to any person with an incurable condition, and as a result have lost touch with the feelings behind this. Sadly, I think GPs sometimes think it is only having a life-limiting condition that is relevant, but having conditions that are life-altering are also significant. The mental health implications of life-altering conditions are significant.

So what would I like to see in an ideal world? In an ideal world I would like GPs to offer patients’ the respect they deserve. Whether a GP believes a condition is serious or not is irrelevant because it is serious to the patient, and they are the ones living with it everyday. It may not be their job to find solutions (and with chronic illness they can’t), but it doesn’t stop them taking a phone call – and it definitely doesn’t stop them explaining an abnormal blood result – what’s more it doesn’t stop them from showing compassion.

Do you still have struggles with your GP after diagnosis? I would love to hear other people’s experiences if you would like to share.

Sarah xx