Category: Gaslighting

Chronic Illness · Comments · Diagnosis · Gaslighting · Invisible Illness · Mental Health

What Did You Say? Comments from Doctors About My Chronic Illnesses

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Have you ever had a medical professional gaslight you? Put you down? Criticise something you have said? Or simply dismiss your concerns about your health like they were nothing? Yes? Then you are not alone. I cannot tell you the number of times this has happened to me and whilst some of these comments I have been able to put down as one of those things, others left me reeling.

So in this week’s blog post I thought I would share some of these statements with you. This is not to slate the medical profession because for the most part they do a fantastic job, this is purely to demonstrate how destructive dismissive words can be.

So let me begin…

If you are feeling depressed, then why don’t you look at the Christmas tree lights?

Now, this first remark was said to me I believe in good faith, however it felt extremely rude when I was sat in the GP’s surgery at the time talking about my depression/anxiety recovery. Predominately because it felt like my mental health issues were being discussed like it was nothing, like they could be turned on and off like a tap from doing something as simple as looking at pretty lights. No productive advice was given alongside this, just embarrassment from myself for talking about it in the first place.

You have taken up an appointment/I don’t know why you are at this clinic

I have actually had these two sentences said to me more than once after being sent to various clinics in search of my chronic illness diagnoses. Whilst I understand this can be frustrating to the consultant you have been sent to if they feel like are in the wrong clinic, to say you have taken up an appointment is unacceptable. Just because my conditions didn’t necessarily match up with their expertise doesn’t make my conditions or symptoms any less worthy of investigation, and by saying this it made me want the floor to swallow up like I should be apologising for wasting their precious time.

Critiques on my appearance

I haven’t pinpointed a specific observation on this, however over the years I have had many medical people mention my appearance in a patronising tone. How is this relevant to my health – I have no idea. The worst was probably a consultant who made a point of telling me I had a half closed eye (similar to a lazy eye), to which I listened to him eagerly thinking it was linked to my condition, before a wall of silence. He was merely pointing it out like I had never used a mirror before because he felt like it. I was hoping to leave with a diagnosis or at the very least advice instead I left with a complex.

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Most women would be grateful they are bleeding less

My periods have been a source of many an issue for a very long time now with one of the first changes being in my menstrual flow. When I went to my GP she told me I should think myself lucky and that most women would be grateful. Never mind all the other symptoms I had or the fact I was only in my twenties at the time and I was concerned they would stop altogether. She sent me away pretty much telling me to get a grip and here I am 5/6 years later waiting to see an gynaecologist because being grateful and thinking myself lucky has left me potentially very unlucky indeed.

I am the doctor, not you

This beauty of a reflection came from my former neurologist who refused to listen to my concerns about being diagnosed as epileptic. I didn’t match the criteria or have the relevant symptoms and my scans were relatively normal yet he was convinced my episodes were epileptic seizures. When asked questions he told me he was the doctor not me and that he knew what he was talking about and I didn’t. I got a second opinion and in my first appointment was told I didn’t under any circumstances have epilepsy. A few appointments later I was diagnosed with Tourettes something my former neurologist could have diagnosed if pride hadn’t stood in the way.

Here we have it five of my most scathing comments from medical professionals. The sad thing is I have many more as I am sure others do too. The general theme I feel from these remarks is a sense of being negatively judged whether it is from my personal appearance to my physical symptoms. The underlying feeling I got was I was time wasting, that it or maybe more accurately I wasn’t worth the respect of proper answers, that I should get on with things.

Like I said at the start this isn’t always the case there are some amazing health experts out there willing to listen, to care and to advice. I am living proof this is the case as I wouldn’t be sat here now with the diagnoses I have otherwise. However, words have power and we should all be thinking how we use them regardless of what profession we are in.

Sarah xx

Chronic Illness · Gaslighting · Invisible Illness · Mental Health

Mental Health and Chronic Illness – Part 1 – Other People

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TW – Please be aware this blog post talks about mental health issues surrounding chronic illness including medical gaslighting and negative opinion from others. If this is something that may be difficult for you at this time, please click off and check out some of my other posts instead.

Today I thought I would talk about a topic very close to my heart: Mental health in relation to chronic illness. Personally, I have found one of the hardest parts of living with chronic illness aside from the symptoms they create, is the mental health implications of persistent, never-ending illness.

When I thought about the various mental health challenges associated with chronic illness I realised there were quite a few. The best I can categorise them is as follows:

  • Other people
  • Yourself
  • The uncertainties/missing out
  • Managing symptoms

I am going to go into each category in more detail over 2-3 blog posts. A – because if you are anything like me reading long posts can be difficult, and B – I want to give myself a little break in-between. With this in mind, let me start with the first category…

Mental Health and Chronic Illness with regards to other people

One of the biggest challenges with mental health and chronic illness is the opinion of others. Many people may say why does this matter? You know your own self to know if you are ill or not, but the reality is it does matter. It matters because being believed is one of the biggest stumbling blocks when it comes to invisible illness. Most chronic illnesses don’t project an image of a sick person; in fact most chronically ill people look completely healthy, like any other person you may encounter on a day to day basis. Unfortunately there is no big neon light above our heads saying ‘Chronic Illness Person Here’ to make it easier for others to identify. It is hard for someone who doesn’t experience illness to get to grips with this concept at times, but also understandable, I mean can you completely resonate with something you have never experienced yourself? Whilst this is annoying, the kick to the gut is no doubt the dismissive behaviour of medical professionals and those who are trained to know better.

Medical gaslighting of chronic illnesses has probably been a thing for who knows how many years, that notion of a stiff upper lip and getting on with it runs rife especially in places like here in the UK. The problem being chronic illness is not something that is going to just disappear and go away, and actually the more you ignore it the worse it can get. The mental health destruction of having a qualified medical professional tell you over and over again that there is nothing wrong with you, is something I can truly say never leaves you. The fact this person or persons who have all these qualifications in medical science is telling you essentially what you believe is all in your head can only lead to one conclusion – it is all in your head. You illnesses and symptoms are something you are manifesting yourself and you are so mentally ill you are able to convince yourself you are having physical symptoms was a notion which led me to question my own state of mind. They were the professionals not me, and when you have someone tell you on a loop you are wrong you only have one option but to believe it, and as a result I couldn’t trust my own actions anymore. Even after it was discovered I was ill, no apology was ever made to me because it didn’t matter to them – I didn’t matter to them.

The problem with not having a medical professional backing your concerns not only impacts your thoughts on your own mental health, but the thoughts of those around you too. The people who love you start to doubt your stability because a medical person must know your body more than you do, and therefore they also start treating you like a mental health problem. The difficult part being even after you are diagnosed the stigma of those dismissed years of illness stay in people’s minds no matter how hard they try to convince you otherwise. The eye rolls, the exchanged glances, the declarations of ‘what’s wrong now’ for a long time filled me with shame. Like I was a thorn in so many people’s sides.

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If this wasn’t enough you have the people in the street who you vaguely know, stop you and ask why you are not working, or why you aren’t more social. Who make their little remarks as they look you up and down, judging. You paint a smile on your face because you don’t know how to react whilst all the while dealing with the little voices in your head telling you they don’t believe you. It shouldn’t matter, but it does because you want people to see the real you and not the version they think you are selling.

One of the saddest things about public opinion on chronic illness is a lot of the time people don’t believe it whether you are diagnosed or not. Or maybe to be blunter they don’t care. There has probably never been a time when this has been reflected more than in the current times with the pandemic. Living somewhere where the lives of the vulnerable has been so disposable has been heart-breaking to say the least, but more than that it has been mentally traumatic knowing there are people who don’t value your life as much as your ‘healthier’ peers. The mental health implications of vulnerable communities has the potential to run on for years as people feel neglected and less valued in society.

So, is there an answer to this particular mental health challenge?

I would say yes, but not one that will happen overnight. It takes kindness and patience with yourself and it takes understanding and education of others. To move forward in society the reality of chronic illness needs to be talked about, and honest conversations need to be had. Chronic illness needs to be normalised and represented more across main stream media to demonstrate how anyone can become ill regardless of age, race, sex and background. Most of all we need to stop treating invisible illnesses like a dirty little secret to be ashamed of, on the contrary we need to make the invisible visible through our communications and words.

Medical professionals need to be trained in understanding the impact their dismissive behaviour can have not only on a patient’s physical, but mental health too. Chronic illnesses diagnoses need to be viewed as important as other diagnoses and support needs to come in the form of helping patients find their new path in life and helping them to combat the emotions they will inevitably face.

Here we have it challenge one – complete! I hope this wasn’t too long a post (I am basing this purely on my own experiences), either way I will tackle the next challenges in my future post. To keep up to date with my upcoming posts make sure you follow me 😊.

As always if you have any comments to share – I would love to hear from you.

Sarah xx

Awareness · Chronic Illness · Fibromyalgia · Gaslighting · Invisible Disability · ME/CFS · Tourette Syndrome

Invisible Disabilities – Why Won’t You Believe Me?

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This week is invisible disabilities week (17th -23rd October), so you guessed it – today I am talking about living with invisible disabilities.

Rather than talk about what constitutes as an invisible illness or disability, today I want to share with you a previous experience I had during my time living with invisible disabilities. This example is from many years ago when I was able to work and socialise – this is no longer the case as my conditions have developed since then, and I now have additional diagnoses and symptoms. Please note the disabilities I am referring to are Fibromyalgia, ME and Tourette Syndrome.

I check the clock again, oh crap it is 30 minutes later to the last time I checked – I must have fallen back to sleep – I am exhausted, my body feels like I am lugging another body around as well as my own, maybe another two bodies even. I am so late.

I get to the bus stop and can see there are no available seats in the bus shelter. They have all been taken. My body is struggling today already, I really could do with sitting down, but the seats are taken with people messing around, or on their mobile phones oblivious to the pain I am in. I hover around until I have no option, but to lean against a wall and silently deal with the pain.

Great, there are no seats on the bus apart from the side seats, the ones reserved for the elderly, those with mobility aids or with pushchairs. I hate sitting in them a) because the seats are too hard for my aches and pains and b) I can sense people judge. Today I sit there, I don’t have the energy to stand. I survive about 3 stops and then typical here comes a pushchair – a double buggy at that. I can sense people’s eyes on me and feel obligated to move. I find myself in the aisle of the bus along with other non-seat finders, a few who are noticeably older than me. People offer them seats and they accept. I am the only one left standing, no-body cares.

I’ve finally made it into work and to my desk. I feel relieved to be able to sit down without barriers. Today I have a lot of work to do and a lot of chattering workmates who don’t seem to know what volume control is. The sound is penetrating my ears making it difficult to concentrate, then a young woman in my team decides to spray some deodorant telling everyone she wants to smell nice. The smell invades my nose, eyes and throat, so I cannot breathe properly. When I mention it to my colleague it is brushed off under the carpet like I am exaggerating. The noise of the others is my team is getting louder, I ask my manager if I can move seats to a quieter spot and he looks at me like I am an alien from another planet. He declines instead telling me I need to learn to adapt to the noise levels around like I am making a fuss about nothing.

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The day is extremely stressful with deadlines at every corner, I can feel the familiar build up in my chest telling me I need to tic. I am able to control it, but it puts enormous pressure on my body. I confide in my colleague who proceeds to tell me I don’t look like someone with Tourette’s and therefore why do I need to tic. The sad thing is I think she thinks she is giving me a compliment.

My fatigue and exhaustion are in full flow, but I arranged to meet my friend after work for some food. My whole being wants to cancel, but I have done this several times this month already because of my symptoms. She never buys it, she thinks I am lying to get out of seeing her. We meet up at her choice of restaurant – somewhere I have never been before – and notice there isn’t anything on the menu I can eat. She knows this I have told her before and I say it again now. She looks at me like I am lying – ‘what nothing at all? ‘Why don’t you try that or that?’ I tell her I can’t because of my stomach issues, she tells me she knew of somebody else who ‘claimed’ to be like me and actually they could eat these things, they had just convinced themselves they couldn’t. Needless to say, I left the restaurant extremely hungry.

My friend walks with me back to the bus stop, it is incredibly cold out and my circulation is struggling despite the layers and layers of clothing. I mention the pain I am in, and she tells me she has the same problem. What Raynaud’s I ask? No, she replies I just get a bit chilly. She also feels the need to mention I was way too quiet. I tell her my ME makes it hard to function let alone talk especially after being at work. She tells me gets tired, how is my ‘tiredness’ any different to hers.

Finally, I am back on the bus on the way home. I cannot wait to get home and to be able to eat and wrap up and call it a day. My head is banging, my stomach is griping, my pain is at an all time high partly from the cold, partly from the Fibro. My exhaustion is making me dizzy and nauseous, so I sit on the front seat. Other people get on, some are elderly and obviously feel I have stolen their space. I am asked to move, those seats are for the elderly or disabled I am told. I tell them I am disabled, but still move. I am told I am wrong because I don’t look disabled or sick, and that I should think myself lucky I look and am as healthy as I am. I feel embarrassed and fix my gaze outside the window, there’s no point arguing they don’t see it therefore they’re never going to believe it.

I collapse into bed, weak and defeated by the day. The saddest thing is I know it will only all start again tomorrow. The unconscious bias against invisible disability/illnesses. The problem being when people cannot see what is wrong with you or the symptoms you are harbouring, they tend to believe your symptoms are not as bad as you say they are, that you are exaggerating and is some cases may believe you are lying. They may think you are convincing yourself you are worse than you are, or in some scenarios believe it is attention seeking behaviour – all because they can’t see it and if they can’t see it, it can’t be real right?….

I hope this post helps in sharing the reality of invisible conditions, and the constant battle it is. What are your experiences? Are they similar to the ones I have described?

Sarah xx

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Chronic Illness · Diagnosis · Gaslighting · Personal

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

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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.

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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