Lived experience

I was being interviewed for a well known magazine the other day, and the journalist asked me if I had any personal lived experience of weight stigma in the medical setting. And I had to think about it for a moment because I was sure I had, but I couldn’t come up with any examples straight away. To begin with, it sent me in to a tailspin. How could I possibly speak about something I had no personal lived experience of?

Then out of the blue I remembered a particular experience that I hadn’t given much thought to since it happened. As I told my story, it reminded me of all the other times I was shamed and stigmatized by a healthcare professional. And whilst the journalist had moved on to the next question, my mind was stuck reliving those experiences and I haven’t been able to forget about them since.

Photo by Kristina Tripkovic 

So I decided I was going to write a blog post about how weight stigma actually manifests itself in the doctors office. I am going to share my own stories as well as the collective lived experience of the many, many people that have reached out to me over the last few months. Rest assured I will ensure that I change the names and detail. Enough so that you can get a flavour of what is happening without being able to recognise your own story. I guess that is my way of saying Any Similarity to Persons Living or Dead is Purely Coincidental.

My Lived Experience

I was about 28 weeks pregnant with my youngest when I was diagnosed with gestational diabetes. There were some concerns raised about the size of my ginormous belly so I had to go for a growth scan. I was pretty anxious the whole way through, and had to deal with a patronising radiographer. She clearly couldn’t believe that I had the audacity to be fat whist lying on her examining couch. So much so that she needed to write “difficult examination due to body habitus” all over my ultrasound report. But the good news was that all was well with my baby and she was an average size. In fact, she was 7lbs 9oz at birth, so hardly the giant that they were expecting.

After I had the scan, I was forced to speak to an OBGyn doctor. She was definitely a junior, perhaps two or three years out of medical school at best. It took her a minute to glance and my scan report and reassure me that everything looked fine. She spent the rest of my 20 minute consultation lecturing me about my weight. Didn’t I know the risk I was putting my baby through, being fat and diabetic during pregnancy? If I kept being fat, there was a good chance I was going to deliver a baby the size of a toddler who would get stuck on the way out and then be rushed to special care because of complications due to my fatness.

To be fair, she used words like shoulder dystocia and hypoglycaemia so it wasn’t quite as dramatic. But since I knew what those meant on account of my own medical experience (I had most likely started medical school whilst she was still in middle school), I could read between the lines. She was slim. She clearly didn’t like the fact that I wasn’t. And the stethescope around her neck and the badge that proudly declared her to be a doctor somehow gave her the right to lecture me for 15 minutes straight about how I simply wasn’t good enough.

How weight stigma impacted my life

I left the hospital feeling so angry and humiliated. The way she had spoken to me had left me feeling vulnerable and ashamed. From that day forward, I was determine to starve myself for the rest of the pregnancy. And I was successful too. I weighed significantly less at term that I did at 28 weeks. Of course it meant that I was a wreck during my third trimester. I struggled to work. I was a pretty useless mother to my two boys, and I will always wonder whether I would have picked up on my mum’s cancer around that time had I not been so distracted. After Grace was born, I was crippled by postnatal depression.

I had it with both my sons too but I refused to accept it and never sought help. But around 9 months after Grace was born (6 months after mum died) I was actively suicidal and terrified that I was going to do something stupid. Part of me knew how much pain I would cause if I were to take my own life. But another part of me (a part whose voice grew louder day after day) believed that my family would be better off without me. I felt like a failure. A big fat failure.

Grace at 1 day old

Obviously I am not blaming that junior doctor for the decline of my mental health and the death of my mother. But nevertheless, she played a part in it. And it’s clear to me now that this is something I haven’t really ever dealt with but it explains a lot. Because after you develop gestational diabetes, you are supposed to be tested for diabetes every year. And my daughter just turned 8 and I have basically been avoiding my doctor where possible because I simply cannot face the idea of being told that I have developed type II diabetes. Because I know what is coming.

Diabetes

Let’s talk about diabetes for a moment, shall we? You develop diabetes for one of two reasons. Either your pancreas stops making insulin (which is seen in type 1 and later on in type 2) or your body becomes resistant to insulin (which is usually the case in type 2). There is no question that there is a higher prevelance of type 2 diabetes among fatter folk. There is also evidence that losing weight lowers your blood sugar.

As a result, the world has been lead to believe that being fat causes diabetes and losing weight cures it. Wrong. As we all know, correlation is not the same as causation. In my opinion, it is a chicken and egg situation. We know that insulin resistance and fatness go hand in hand, but we don’t know which one causes which. Or if it’s neither of the above.

The problem is that the entire medical profession has been lead to believe that weight loss is the primary goal in treating diabetes. Does it actually work? In the longterm, no. Because weight loss is impossible to sustain in the vast majority of patients. Also the majority of improvement that we see in blood sugar levels happens in the first few days after behaviour modification takes place, long before any significant weight loss occurs. And yet that doesn’t stop the majority of GPs, diabetic nurses and endocrinologists from stigmatising their patients every single time they see them. Which is why so many of you have written to me with similar stories of your diabetes care.

Your lived experience

Diabetes care is not the only time patients are stigmatised in the doctor’s office. From a sore throat to a severed digit, a lot of HCPs will use any opportunity they have to lecture a patient about their weight. But from what I have learned from my own and other people’s lived experience, is that there are a few areas of medicine that I like to think of as the worst offenders. I am not an expert in all of these conditions. Any advice that I give here is merely my own opinion. It should in no way be considered a substitute for seeking individual medical advice. Nevertheless, I wanted to offer a few thoughts.

PCOS

Polycystic Ovarian Syndrome is a metabolic condition, although many people think of it as a gynaecological disorder. It tends to present around the time of puberty and is characterised by hyperandrogenism and ovulation disorders. Hyperandrogenism is a fancy way of saying an excess in ‘male’ hormones such as testosterone. That explains why the clinical features of PCOS include hirsutism and male-pattern baldness. Ovulation disorders will usually manifest as irregular or absent periods.

Here are some important facts about PCOS

  1. It affects up to a quarter of all women, depending on what criteria you use to diagnose it
  2. It is least common in Chinese women, and most common in Middle Eastern and Black women
  3. You don’t need to have a scan to diagnose it
  4. We do not know what causes it but we know there is a genetic link and it runs in families
  5. It is associated with insulin resistance and managing this should be the mainstay of treatment
  6. As mentioned above, insulin resistance is associated with weight gain but we do not know which one causes which (if either). Yet most doctors believe that PCOS is caused by being fat. Since it emerges in puberty and there are a number of women who are straight sized and living with PCOS, it is reasonable to assume that this is not the case.
Photo by Josefin 
The PCOS journey

Now here is what usually happens to women in the UK with PCOS. They visit their doctor when they are a teenager complaining of irregular periods, severe acne and or features of hypergonadism. Their doctors fails to make a diagnosis at this stage (even though they meet the criteria). During their late teens and early twenties they find that they are gaining weight more than others around them and struggle to lose it. Their periods remain irregular so they visit their doctor to ask to be placed on the Combined Hormonal Contraceptive Pill. The pills has been shown to help with menstrual irregularities.

At this stage they are denied it on account of their BMI. Why? Because current guidelines state that the risk of prescribing this form of contraception outweighs the benefits once your BMI is over 35. Of course, the benefits they are talking about in this case is contraception (of which there are currently 15 choices) as opposed to the treatments of menstrual irregularities, hormonal imbalance and acne which are common in PCOS. But this doesn’t matter. Request denied.

It’s too late to change

Once they hit their thirties, many women start trying for a baby. PCOS is associated with subfertility in some (but definitely not all) cases. Should a woman struggle to conceive, she will be referred to a fertility specialist where she will most likely receive her diagnosis if she hasn’t already. Finally, she understands that it is not her fault that she gains weight. That she isn’t imagining things and that there is a good reason why diets don’t work as well for her as they do for others. So what’s the treatment doc? Oh that’s simple, lose weight. But, that’s really hard for me to do on account of my PCOS. Tought shit. What about getting pregnant? Sorry, you’re too fat to qualify for fertility treatment so there is nothing we can do about it.

Is this story sounding familiar to anyone? I’ll bet it is, because I have heard this story dozens and dozens of times. By my own patients and by people who have reached out to me desperate because they just don’t know what to do next. And they feel like such failures because their body has failed them and they have been led to believe that it is all their fault.

How it should be

So here’s what should have happened. A person visits their doctor when they are a teenager complaining of irregular periods, severe acne and/or features of hypergonadism. The doctor diagnoses PCOS and starts her on the pill. That helps with the acne and the irregular periods. The doctor also explains that through no fault of her own, she is going to struggle with weight gain and insulin resistance. They encourage her to maintain a healthy lifestyle in a completely non-judgemental and weight-inclusive way. They are aware of the evidence that shows that weight talk and dieting in young people can have quite disastrous consequences on their mental health, and increase their risk of developing an eating disorder and developing ob*sity later in life. So they steer clear of these topics altogether.

During their late teens and early twenties, the doctor checks in on the patient on a regular basis. If they are concerned about insulin resistance and progression towards type 2 diabetes, they commence the patient on a medication that reduces insulin resistance. Traditionally this was metformin but there is emerging evidence that a relatively new family of drugs called SGL2 inhibitors are also extremely effective. These are currently not licensed to treat PCOS but may be a way forward in the future. I love prescribing these medications to my diabetic patients because they almost always have such an amazing response.

The doctor also checks in on their mental health. They understand that hypergonadism can lead to feelings of being unattractive and loss of feminine identity. This in turn can lead to sexual health issues and negative body image. Doctors will also screen for mental health conditions including depression, anxiety and eating disorders, all of which are common in PCOS, knowing that early intervention leads to better long term outcomes.

Fertility Services

Doesn’t this all sound amazing? Shall I let you into a little secret? Aside from the weight inclusive approach, these are the current NICE guidelines for the management of PCOS. In other words, that is how every single patient with PCOS should have been treated by their doctor in the UK. I added the weight inclusive stuff because we all know that this should be an essential part of healthcare, even though that has not yet been recognised by the National Institute for Clinical Excellence.

Let’s talk about fertility for a moment, shall we? Women in the UK are being discriminated against because of their BMI. Not only are they unable to access fertility services on the NHS unless their BMI is under 30, but they also cannot access private treatment unless their BMI is under 35. There was one private clinic that didn’t have a weight limit until about a month ago when they changed their criteria. In my opinion, this is a form of discrimination and is a human rights issue. But this is not my field of expertise. Fortunately I have a good friend that I can recommend who is an absolutely diamond and an expert in the field of weight inclusive fertility. Her name is Nicola Salmon and she is a Fat Positive Fertility Coach.

Photo by Sangga Rima Roman Selia 

Maternity Services

If you do fall pregnant, it’s a lot harder being pregnant in a fat body. From your first appointment with the midwife to the third stage of labour, you will be treated differently if you inhabit a bigger body. Some of this is to protect you and I am not going to speak out against evidence based medicine. I will, however, remind everyone that evidence changes and it is important that we do not base our policies on outdated or inaccurate research that is tainted by confirmation bias.

Being Fat and pregnant is hard

That being said, here is a list of ways in which people have experienced weight stigma during pregnancy. Remember that this is lived experience. This is anecdotal as opposed to evidence based, but that doesn’t make it less important:

  1. Pregnant women are weighed repeatedly
  2. They are given unsollicited weight loss advice throughout their pregnancy
  3. Midwives and OBGYNs ferquently advise weight loss during pregnancy and refer patients to weight loss programmes
  4. Women are congratulated for losing weight during pregnancy, even though this is often a sign of a serious underlying cause
  5. Instead of being a joyous occasion, ultrasound scans can be extremely traumatising and anxiety provoking on account of the negative way some radiographers treat their patients.
  6. Women are routinely denied their choice of birth plan for completely ridiculous reasons. For example most hospitals will not allow fat women to have a water birth. Their reason? Because if there’s a complication, how on earth will she be able to get out of the water? Because of course all thin people are fit enough to leap out of a birthing pool during their second stage of labour. But all fat women are incapable of doing so.
  7. Studies have shown that the majority of healthcare professionals have both explicit (conscious) and implicit (unconscious) anti-fat bias and will routinely give preferential treatment to thin patients over fat ones.

I have never once heard a fat woman talk of the miracle of childbirth and the wonderful experience that she had throughout her pregnancy. I’m not saying it never happens. I’m just saying I have never heard of it. Whenever I hear a thin woman talk on instagram talking about her amazing birthing plan, I want to beat her over the head with a placenta.

Arthritis

Speaking of Instagram, I just shared a story today about a young man with chronic arthritis in both hips that was in need of a hip replacement. According to Ithe surgeon who posted it, he was healthy. Aside from the fact that he had a BMI of 45. The patient used to be a professional football player for the NFL. That is most likely how he ended up with such advanced arthritis at such an early age. His X-Ray was pretty impressive. Bone was rubbing against bone, and he must have been in a lot of pain.

The surgeon was advocating for the patient but there were several other doctors who expressed varying levels of concern about the risks of the procedure. Some felt the risks were to great and he should only be entitled to conservative treatment. Many felt the patient should be forced to lose weight prior to any surgery and suggested a bariatric referral to begin with. In other words, they agreed that he does need a hip replacement but it is better to subject him to a high risk stomach amputation beforehand in the hope that he won’t be as fat when he undergoes the operation.

Photo by Max Bender

Orthopaedic surgeons will argue that the risk of post surgical complications is higher in fatter patients. But does that mean that the surgery cannot go ahead? Isn’t the doctor’s duty to inform the patients of the risks and benefits and allow them to make their own informed choice? When did it become the doctor’s job to make that decision on the patient’s behalf?

Surgery

It’s not just joint replacements either. All sorts of routine procedures are being denied to otherwise healthy patients who happen to be fat. Surgery for gallstone and endometreosis for example. Fat folk are forced to suffer in pain until they prove themselves to be worthy enough by losing weight. I have heard from a number of people who are starving themselves in the knowledge that this will lead to further problems down the line, just so they can qualify for surgery.

Not only that, but patients are being led to believe that their weight has caused their condition in the first place. Being fat doesn’t cause endometreosis. Not that we know of, anyway. It doesn’t cause arthritis. The two may be related but there is no proof that one causes the other. We have got to stop blaming patients and using their weight as an excuse not to treat them.

Lipoedema

There’s this little known condition called Lipoedema (Lipedema if you’re Amercian) that very few doctors know about. It is a chronic progressive disorder that almost solely affect women and causes fatty deposits to develop under the skin. We’re not sure what causes it but there is definitely a genetic and hormonal component. Women tend to have a slim trunk and relatively larger legs and arms. The skin itself can feel quite nodular and sensitive to touch, and over time women can experience a significant amount of pain and disability.

This is an extremely distressing condition which tends to worsen over time. To add insult to injury, many doctors dismiss patients as being ob*se and advise them to eat less and exercise more. Several women have told me that their own GPs laughed at the them when they tried to explain their condition. The mainstay of treatment in the UK is to advise people to lose weight and to wear compression stockings. How are people supposed to lose weight if they have a condition that causes them to develop fatty deposits under their skin?

Since 2005, several successful surgical techniques have been developed in Germany, which have been shown to significantly improve patient outcomes. Yet very few are able to get this treatment on the NHS. In fact, the majority of women haven’t even received a diagnosis yet because they have been dismissed as being greedy, lazy and lacking in self-discipline. Most progressive conditions are met with a great deal of empathy within the medical profession, but from what I gather this is not the case when it comes to lipoedema. Anyone want to hazard a guess as to why that is?

Photo by Juja Han 

Idiopathic Intracranial Hypertension

This is another one of those conditions that almost universally affects women and starts during childbearing age. It causes headaches and if left untreated, can cause blindness. 90% of people who develop this condition are supposedly ov*rweight. This explains why the majority of guidelines focus on weight loss as a treatment. But there is evidence that this condition is associated with hormonal changes, metabolic disorders, a whole host of medications, anaemia, chronic kidney disease… I could go on but I don’t want to bore you.

It is important to identify any underlying causes, because this is the mainstay of treatment. But unfortunately, most doctors are too quick to blame weight gain and forget about the other management options. Diuretics, steroids and serial lumbar punctures are all options but these are often not even offered to patients until they lose weight.

Fatty Liver

Fatty liver often gets picked up on ultrasound. The majority of people with this incidental finding will not go on to develop complications from it and their livers continue to function normally. In rare occasions, the structure of the liver is damaged by these fatty infiltrations in a similar way to alcohol. In those cases, the unlucky patients goes on to develop chronic liver damage (aka cirrhosis of the liver).

If fatty liver is picked up on a routine scan, the doctor should be checking the liver function to begin with. If that is normal, they should be recommending simple lifestyle measures irrespective of their size. As I mentioned in my previous post, weight loss isn’t the answer. Encouraging weight loss is a sure fire way to get the majority of patients to gain weight in the future. And that in turn will only exacerbate the condition.

How I became the Fat Doctor

I want to end this post by sharing some more of my own lived experience. This time, I want to tell you the story of how I became the fat doctor. Some of you will have heard me tell the tale of how I turned 40 and discovered that I was allegedly 40kg overweight with a BMI over 40. I decided that it was one too many 40s for me and leapt straight into dieting mode. What I haven’t mentioned up until now is the impact that my own doctor had on this decision.

A couple of months before my 40th, I sought out the help of a GP who specialises in doctors with mental health conditions. We began having regular telephone appointments from the beginning of the pandemic two months prior. She often spoke of the four “pillars” of mental health – diet, exercise, sleep and meditation. But she was particularly focussed on diet and decided to make it her mission to get me to go on hers.

It worked for me so it will work for you

She extolled the virtues of the paelo/keto diet. No carbs. No fruit. Lots of vegetables and lean proteins. She would go on and on about it, and I found myself joining in the conversation, even though I really didn’t want to. When I expressed an interest in losing weight, she stopped being a mental health specialist and took on the role of weight loss coach. She didn’t ask my permission. She didn’t check whether it made me uncomfortable either. Every time we spoke she would ask me what I had been eating and then spend some time telling me what she ate throughout her day. Apparently she had been gained weight after the birth of her children and she lost 4 stone. It therefore followed that if it worked for her it was bound to work for me too

Looking back, I can see that she had a lot of issues. She would ask me whether I wanted to look better so that people would notice me. She would say things like “wouldn’t you like it if people started complimenting your figure?” and other such ludicrous questions. At the time, I felt I had no choice but to go along with it. I was so ashamed of myself and of my body, that I just wanted to prove that I wasn’t a complete failure. I figured if I stuck to her diet and lost some weight, she would be proud of me and somehow that mattered more to me than my own mental health.

A long way to go

I’m still unpacking this, as I only decided to stop speaking to her about 6 weeks ago. It’s really hard standing up to your own doctor, even if you are a doctor yourself. And if I am honest with you, I took the easy way out and just missed an appointment one day. Yes, you heard me right. I chose avoidance over confrontation. I took the cowards way out. Maybe one day I will work up the nerve to tell her how much damage she caused.

By September I was struggling with low self-worth and depression secondary to body image issues. I wonder if I would have felt that low had I found a doctor who supported me and never once mentioned my weight or weight loss? That being said, she is the reason that I became a fat activist. She is reason I am campaigning against weight stigma in the medical profession. Hers was the final nail in the coffin that was my history of dieting.

Never again.

8 thoughts on “Lived experience”

  1. So interesting and insightful and that last story of yours was especially powerful. Thank you so much for sharing your experiences.

  2. Thank you so much for sharing. Reading this has helped me piece together so much of my experience from a teenager through pregnancy to now. I’d love to hear more on your thoughts on the links between weight gain and insulin resistance and whether there is any way to break the cycle. Would metformin or other drugs help with both?

    1. There is definitely an indication for starting medication such as metformin for PCOS. Unfortunately in the UK, that doesn’t happen very often which seems ludicrous since it could prevent diabetes in young women. I know some endocrinologists who routinely prescribe it but most people never make it to see an endocrinologist since most people don’t even get diagnosed when they should.

  3. Claire Johnson

    This made me cry in a good way. I’m 41. I was diagnosed with PCOS at 26. And told that because I had allowed myself to get fat I was now likely infertile. I was told to go away and lose weight. Which I couldn’t do. I tried everything. Stuck to everything. And lost nothing. So I comfort ate and got fatter. Happily I got pregnant out of the blue after 2 years of trying and finally giving up. My pregnancy was the only time ever my hormones have balanced and I didn’t put on any weight at all the whole time. Immediately after my daughter was born miraculously I lost weight easily. Lots of it. Then my hormones settled. The PCOS got worse. The weight went on and at 36 I was told a total hysterectomy and oopherectomy was my final option. Its caused a truck load of problems and the PCOS and fat are still here. You are a breath of fresh air.

  4. Clare Farquhar

    I have suffered weight stigma all my adult life yet until 3 years ago after a fall while out walking which has left me with chronic knee pain I have always been active and healthy. All general health checks are always within normal limits usually to the HCP surprise. The ripple effect of these judgemental comments will never leave me. You are a breath of fresh air and I salute you!

  5. I have had to read this in chunks as it has resonated with me far too much. I will come back to it and read it again to hopefully help me work through some of this anger and sadness and just need to cry! I do not have a PCOS diagnosis, but I heavily suspect it!

    As a long-covid sufferer (not the worst, but enough that I am struggling every day) I have read that there seems to be a link between PCOS and long-covid, or at least that covid interracts with PCOS in challenging ways. I would love to hear your thoughts on this! https://edition.cnn.com/2021/05/23/health/women-covid-pcos-high-risk/index.html
    I had a terrible experience with a nurse doing my ECG for long covid telling me I needed to lose weight and I would be fine. Traumatic, and if I have to go back again I will find it very difficult.

    Thank you so much for these excellent blogs!

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