Why Is OCD So Misunderstood And Misdiagnosed?
Obsessive compulsive disorder (OCD) is a very common yet very misunderstood diagnosis. Those with the disorder are often misdiagnosed, causing a myriad of additional problems. The question is, why is OCD so misunderstood and misdiagnosed? This article will cover all you need to know about the topic, including what we can do about it.
What is OCD?
First of all, let’s cover the basics of OCD to give us some knowledge to work from. OCD is a mental illness categorized by a cycle of obsessions and compulsions. Obsessions are in, in essence, intrusive thoughts which the OCD sufferer attaches a lot of significance to. We all have intrusive thoughts, every single one of us. They’re thoughts which pop into our mind at random times. They might be ‘strange’, ‘weird’, or even disturbing in nature. They don’t reflect how we truly feel and they’re completely natural. Those without OCD don’t attach much importance to these thoughts: they might briefly think the thoughts are strange and then simply let them pass. They don’t think any more about them and nothing comes from them.
However, someone with OCD attaches a lot of importance to their intrusive thoughts. They might think that something terrible will happen as a result of their thoughts. They may feel that their thoughts make them a terrible person, even though intrusive thoughts don’t stem from how they really feel.. They might worry what others would think if they were aware of their thoughts. They will begin to feel very anxious about their intrusive thoughts and focus on them a lot: this is what makes intrusive thoughts obsessions for someone with OCD.
Obsessions can centre around a wide range of themes and one person might have lots of types of obsessions. They feel impossible to ignore and cause great distress. As a result, someone with OCD experiences a high level of anxiety, so much so that they feel they need to do something to cope. This is when compulsions begin.
Compulsions are repetitive or ritualistic actions the individual with OCD carries out in order to try to cope with their obsessions. They might carry out compulsions to try to stop something bad happening to themselves or others as a result of their obsessions. They might do so to try to lessen their emotional distress. They may perform compulsions to attempt to ‘make up’ for being a bad person and for having these thoughts. There are many reasons behind compulsions, depending on the individual.
At first, compulsions may lessen the individual’s anxiety slightly. However, the anxiety quickly comes back and often is much stronger. Then the individual has to carry out another compulsion. Anxiety grows and so the cycle goes on. More and more compulsions are required to try to gain relief, yet the compulsions are actually worsening the individual’s OCD symptoms.
Just like obsessions, there are many forms compulsions can take and one person may display many types of compulsions. Even if the person is completely aware that their obsessions and compulsions are not grounded in reality, they will feel driven to carry them out anyway for fear of what will happen if they don’t.
The cycle of OCD is extremely tough to break but with treatment, it is possible to overcome OCD symptoms. OCD treatment typically entails psychological therapy, sometimes along with medication to help lessen anxiety. With treatment, someone with OCD can get their life back and learn how to keep managing their symptoms as they move forward.
Common OCD misconceptions (and the truth)
OCD affects around 2% of the population across the world. It’s such a common disorder, yet it is so misunderstood. There are a wide range of misconceptions about OCD, causing stigma and confusion around the disorder. Stigma means that people with OCD are viewed negatively because of their disorder. We’ll cover some of the most common misconceptions and replace them with the truth!
It’s all about cleaning and organising
Many people think that OCD is all about keeping things really clean and tidy. This is far from the case. Obsessions and compulsions in OCD can follow many themes. Yes, some people may have contamination obsessions, meaning they fear germs or contamination in some form. Some compulsions may involve cleaning (such as repeatedly washing their hands or cleaning their environment), organizing and arranging. However, this is far from the only theme that obsessions and compulsions can follow!
In fact, those who do have cleaning compulsions are not just naturally neat and tidy. Obsessions and compulsions stem from a deepset fear that something awful is going to happen. They are extremely distressing and unwanted. It’s not just because they like to keep things clean. Those who have OCD and don’t have compulsions focused on organisation and cleaning are actually likely to find it very difficult to keep up with household tasks of this nature, because their OCD takes over every aspect of their life. It’s vital to remember that not all people with OCD will experience cleaning and organising compulsions: OCD is not defined by these themes.
Everyone has a ‘bit of OCD’
It’s not uncommon to hear the phrase ‘I’m a little bit OCD’. Some people truly believe it’s possible to be a ‘bit’ OCD. OCD is a serious, debilitating mental illness. It’s not possible to have it a little bit. You either have OCD or you do not.
Being ‘obsessed’ with something is the same as OCD obsessions
The meaning of the word obsessed is often misunderstood when it comes to OCD. When those without OCD refer to being obsessed with something, they tend to be referring to being really enthusiastic about something they enjoy. For example, they might say they’re obsessed with a new TV show or a new outfit. There’s nothing wrong with this. However, the meaning of the word obsessed is often confused with OCD obsessions. OCD obsessions are extremely upsetting, disturbing, intrusive thoughts which the individual can’t get rid of: they are not something enjoyable or pleasant.
OCD is funny or quirky
Some people interpret OCD as funny or a quirky personality trait: this is far from the case. OCD is not remotely funny. It’s a life-altering, horrendous disorder to live with. It’s certainly not quirky or interesting. It’s not anything you would voluntarily have. OCD does not reflect an individual’s true personality: in fact, their obsessions and compulsions will be in contrast to who they really are.
OCD involves psychosis
Psychosis refers to a mental illness symptom which causes people to lose touch with reality. The NHS explains that this can involve, “seeing or hearing things that other people cannot see or hear (hallucinations) and believing things that are not actually true (delusions).” Some people mistakenly think that OCD is a psychotic disorder. This is not the case.
Intrusive thoughts are the individual’s own thoughts, rather than a voice they are hearing. While magical thinking (meaning someone with OCD thinking that their thoughts can influence events) might appear similar to delusions in psychosis, this thought pattern doesn’t stem from psychosis. Some psychotic disorders, such as schizophrenia, can occur at the same time as OCD. Someone with OCD can develop psychosis, but it’s vital to remember that this is not a standard symptom of OCD itself.
It’s all about compulsive behaviour
From the outside, it can look like OCD is all about compulsive behaviour. However, this is far from the case. As we’ve already discussed, OCD is a cycle of obsessive thoughts, high anxiety, and many other emotions, along with the compulsive behaviour that may be observed from an outsider’s perspective.
If there are no observable compulsions, they don’t have OCD
Some people think that if an individual is not carrying out compulsions that they can see from an outside perspective, they don’t have OCD. That’s not the case. While all forms of OCD involve obsessions and compulsions, you may not be able to see a person’s compulsions. They may have milder symptoms and hide their compulsions from you. They may have mental compulsions, which means that their compulsions are carried out inside their mind. Mental compulsions are just as valid and just as difficult to live with as overt compulsions.
People with OCD aren’t self-aware
It’s a common misconception that people with OCD aren’t aware that their obsessive thoughts and compulsive behaviour aren’t based in logic. However, the vast majority of the time this is not the case. Most people with OCD are fully aware that their symptoms are not logical, however that doesn’t stop them from feeling the high emotions and persuasive fear that comes with their thoughts. Despite their self-awareness, the OCD cycle is so powerful that they struggle to break it without help.
This article aptly explains that OCD sufferers, “know that just because they think something is going to happen doesn’t mean it will, and they know that acting on their compulsions won’t stop or prevent something, but they can’t risk it. This is what makes OCD so distressing for sufferers.”
Someone with OCD is dangerous
Some themes of obsessions centre around things like harm or are of a sexual nature. An individual with OCD might have very taboo thoughts about sex or have fears that they are going to harm their loved ones. When someone who doesn’t fully understand OCD hears this, they might assume that the individual is dangerous. This is not true!
Someone with OCD fears their obsessive thoughts so much and feels so embarrassed, guilty, and distressed by them, precisely because they do not line up with how they truly feel. They are driven to carry out compulsions because they are so revolted by their thoughts. They are not dangerous and are not at risk of acting on their thoughts.
Only people with OCD have intrusive thoughts
Some people may believe that only people with OCD have intrusive thoughts. However, as we discussed earlier, every single person has intrusive thoughts now and then. They even have them about the same sort of themes that someone with OCD does. It’s the significance that someone with OCD attaches to these thoughts that makes them obsessions.
You can ‘just stop’ compulsions
Those without OCD may think that the individual can just stop carrying out their compulsions. It’s common to think that if they just relax more or if they are made aware of how illogical their behaviour is, they will be able to stop their actions. This is very harmful and untrue. The OCD cycle is a vicious one and can’t ‘just be stopped’. It takes treatment, hard work, and time to overcome.
OCD can’t be treated
A lot of people think that OCD can’t be treated, including some of those with OCD: this is completely false. There are many proven, scientific treatments available which can help an individual get their OCD under control and enable them to gain relief from their symptoms.
What makes OCD so misunderstood?
We’ve covered many of the ways OCD is misunderstood, but the real question is why are there so many misconceptions about OCD? There isn’t one simple answer. Unfortunately, there are many factors which contribute to this misunderstanding.
Lack of education
A majority of the misunderstanding around OCD comes from lack of education. While mental health awareness is growing, there are still a lot of people who aren’t getting access to mental health education. Although there are lots of wonderful educational resources available, the majority of people are either unaware of them or don’t come across them in their daily life. Many people don’t seek out information about mental illness simply because it doesn’t affect them or because they aren’t sure where to turn.
The majority of schools don’t teach children about mental illness, which means they grow up with less understanding and less awareness of the topic. If children’s parents aren’t educated on mental illness, children tend to be less aware as they grow up. When they become adults, they carry this lack of awareness with them into the world. They become parents, teachers, employers, colleagues, partners, and friends who are uneducated about mental illness: so the stigma spreads.
Those who haven’t had an experience of mental illness themselves, whether themselves or through a loved one, tend to be less informed because they haven’t ‘had a reason’ to seek that knowledge and haven’t learnt through experience. This study on stigma towards those who have a mental illness found: “Several studies show that stigma usually arises from lack of awareness, lack of education, lack of perception, and the nature and complications of the mental illness, for example odd behaviours and violence.”
OCD in the media
A lot of what people see of OCD is in the mainstream media and unfortunately, a lot of fictional representations aren’t accurate. Even those which are accurate or those stories in the media which are real have, particularly in the past, tended to centre around fear of germs and cleaning compulsions. This creates a stereotyped image that doesn’t give a full picture of the disorder. If this is all you have ever seen about OCD, it’s natural to form a belief that this is what OCD is.
Poor representation in the media plays a very significant part in stigma and misunderstanding around OCD. In fact, this 2019 study clearly states that the media causes stigma: “Mental illness stigma is a national issue prevalent due to common misconceptions of mental illness presented in media and entertainment outlets.”
Using OCD as an adjective
Given the many misconceptions around OCD, a lot of people use OCD as an adjective. For example, if someone is very particular about cleaning their house they might say ‘I’m so OCD’, or if they see a friend being very strict about how they arrange their belongings they might say, ‘there they go being OCD again’. OCD is not an adjective. Using it as one perpetuates stigma and contributes to the misunderstanding around the disorder, encouraging other people to see it as something lighthearted or ‘all about cleaning and being neat’.
A lot of people make jokes about OCD. This might because they don’t understand how much emotional distress an individual with OCD is going through. They may see repetitive or ritualistic behaviours and think they appear ‘funny’. Some people make jokes because they feel uncomfortable about such a serious subject. Others may think making a joke makes things more lighthearted.
However, OCD is far from a joke to those who suffer from it. While some people with OCD may find humour useful with close loved ones (this is completely valid), unless you are in this situation jokes are unhelpful. The more jokes are made about OCD, the more other people think it’s acceptable to make their own jokes. This contributes to the stigma around the disorder.
Most of what people can see of OCD in someone else are obvious compulsions. They don’t see the many other invisible symptoms like obsessions, mental compulsions, anxiety, emotional distress, and so on. If they don’t have any other information, this can limit their understanding of what the disorder actually consists of. Even if a loved one explains their disorder, often people struggle to really understand symptoms they can’t see and have never experienced themselves.
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What makes OCD so misdiagnosed?
Unfortunately, this misunderstanding and stigma around OCD also exists within the medical community. OCD is highly misdiagnosed. In fact, almost half of all OCD cases are misdiagnosed initially. This article discusses a study which assessed a number of qualified mental health professionals, all of whom were members of the American Psychological Association (APA). The study found that a considerable percentage of the professionals misdiagnosed a number of OCD obsessions: “15.8% misdiagnosed contamination obsessions, and 28.8% misdiagnosed religious obsessions. 42.9% of these professionals misdiagnosed sexual obsessions about children”.
Due to this trend of misdiagnosis, it can take years for someone with OCD to get the correct diagnosis and subsequently get the help they need. This article states: “the average person with OCD will see three to four doctors and spend around 9 years looking for treatment before receiving a correct diagnosis.”
This naturally leaves us wondering, why is OCD so misdiagnosed? Let’s take a look at some of the reasons this situation is so common. It’s vital to note here that when you are able to be assessed by a properly trained mental health professional, you will be able to get the correct diagnosis and the help you need to get your life back on track.
Lack of education and training for medical professionals
Unfortunately, many medical professionals are not getting access to the detailed education and training they need about mental illness. For most of us, the first time we reach out for help, we will turn to our GP. Even the best of GP’s are not trained specifically about how to deal with mental illness. They’re trained in primary care, while accurate diagnosis and treatment of OCD requires a specialist mental health professional.
To the untrained eye, some OCD themes may be overlooked or mistaken for something else. For example, sexual obsessions focused on children are often mistaken as paedophilia, when this is far from the case. One article explains that 85% of doctors mistook obsessions about sexuality as confusion about sexual identity and the process of coming to terms with your sexual preference.
Due to this lack of knowledge, it can be difficult to be referred by your doctor to specialist mental health services who can give you an appropriate assessment. Depending on where you live, things may be easier or harder. It often takes a lot of self-advocacy to access mental health services.
Similarities to other mental illnesses
Symptoms of OCD often appear similar to other mental illnesses, especially to an untrained eye. These similarities often lead to a misdiagnosis of another mental illness. A wide range of other anxiety disorders, some tic disorders, autism spectrum disorders, and attention-deficit/hyperactivity disorder (ADHD) are only a few of the disorders OCD is often mistaken for. However, to an appropriately trained professional it’s possible to see distinct differences in the disorders.
Comorbid mental illness
Comorbid mental illness means that an individual has two or more mental illnesses at the same time. In the USA alone, 90% of people with OCD also have another mental illness. It’s extremely common for OCD to occur alongside another diagnosis. When two disorders are displayed in the same person at once, it can be difficult to tell the difference between the two. One may be diagnosed while the other goes undiagnosed, or both may be misdiagnosed.
OCD is commonly comorbid with a range of mental illnesses including anxiety disorders, major depressive disorder, bipolar disorder, attention-deficit/hyperactivity disorder (ADHD), eating disorders, autism spectrum disorders, tic disorders, hoarding disorder, body dysmorphic disorder, and other compulsive related disorders.
Fear of being honest
Many people with OCD are afraid to reach out for help. The act of seeking help when you are struggling with symptoms of OCD is hard enough in itself. It takes a lot of courage and can be challenging. The stigma and misunderstanding around OCD only add to this, making people afraid to seek help and be open about their symptoms for fear of how they will be perceived by others, including medical professionals. Those with OCD may fear the potential for misdiagnosis we’ve mentioned and the years it may take for them to access the treatment they need.
OCD obsessions can cause people to be filled with shame, particularly those obsessions which centre around taboo topics. They may be so ashamed that they simply can’t imagine voicing the thoughts they are having to their true extent. This can happen even if they are aware that the thoughts aren’t their fault and that they don’t really feel that way: OCD distorts how you see yourself and makes you doubt your true intentions. Even if they have accessed appropriate mental health care, this can lead to people with OCD holding things back, which unfortunately can lead to misdiagnosis or treatment being less effective.
Risk vs reality
Taboo topics of obsessions, such as those revolving around harm, sex, self-harm, and suicide, are often misunderstood by mental health professionals. To those who are untrained, they can be interpreted as the individual being at risk for acting on these behaviours. We know that this is far from the case: the reality is that people with these obsessions do not truly feel this way and are not at risk of acting on their behaviours.
This lack of knowledge can lead to the wrong diagnosis, such as sexual obsessions about children being diagnosed as paedophilia or someone with harm obsessions being viewed as dangerous to themselves or others. Research has shown that: “Adults and children with obsessive thoughts about self-harm or harming others were commonly misdiagnosed with suicidal or homicidal ideation, often resulting in hospitalization, which only serves to reinforce the individual’s fear that he or she is dangerous.”
Previously incorrect categorization of OCD
The Diagnostic and Statistical Manual of Mental Disorders (DSM) is the guide used by mental health professionals in the USA and most of the world, of all mental illnesses. It includes descriptions, symptoms, and guidance for diagnosing and treating all of these disorders. Unfortunately, in the past, OCD was categorized in a section with all of the anxiety disorders, which caused some confusion. This could have contributed to misdiagnosis over the years.
Thankfully now OCD has been put in a more appropriate section making the guidance (and the diagnostic process) clearer for mental health professionals. This post on the topic from the Clinic for OCD and Related Disorders at Sunnybrook Health Sciences Centre aptly explains that this change: “could, for instance, improve the focus of research into the underlying causes of OCD and the related disorders. What’s more, patients should now have a better chance of being accurately diagnosed. And with a correct diagnosis, patients should get more targeted and effective treatment plans than they would have received in the past.”
What are the effects of misunderstanding and misdiagnosis?
This misunderstanding and potential for misdiagnosis are extremely damaging to those with OCD and those around them. We’ll cover some of the main reasons it can be so incredibly harmful.
Having OCD is very isolating to start with, but when you feel that other people don’t understand what you’re going through, it can make you feel so alone. When others make jokes about something horrendous you are going through, it can feel isolating and upsetting. When you fear trying to make friends or socialize with loved ones because they may misinterpret your behaviour, you might withdraw further. This feeling of loneliness only increases the chances of depression and a sense of hopelessness for the individual.
Fear of talking about OCD
Worrying about whether loved ones will understand what you’re going through and anticipating potentially stigmatizing reactions (even if they mean well), can cause someone with OCD to refrain from bringing up their OCD to loved ones. They may fear bringing their OCD up at work or school and to new people they meet for fear of their reaction. Instead, they might bottle things up and try to struggle on alone.
Stress, increased anxiety, isolation, increased fear, and all of the other emotions that are caused by stigma and misunderstanding can worsen OCD symptoms. When someone with OCD is worried or stressed, they often find their obsessions plague them even more and they need to carry out even higher numbers of compulsion to cope.
People facing stigma are likely to start feeling increasingly bad about themselves. Shame can be emphasised and confidence reduced. This only perpetuates OCD symptoms and can lead to other mental illnesses, such as other anxiety disorders and depression.
Without the treatment needed, OCD will run rampant, likely getting worse over time. This can make a very difficult disorder unimaginably torturous. There’s a real danger that people with untreated OCD will find that depression follows. The risk of self-harm and suicide as a result of stigma, lack of treatment, and misdiagnosis is significant.
Making people less likely to seek help
Just as people may withdraw from talking to loved ones as a result of stigma, it can also make people much less likely to seek help. It’s very difficult to reach out to a doctor for help about a mental illness to begin with, but when you fear that you are not going to be diagnosed correctly or will be viewed as dangerous, it’s understandably terrifying.
It’s not just the potential for misdiagnosis that stops people seeking help: misunderstanding and stigma from society plays a significant part too. When people joke about OCD and make light of it, they are playing a part in normalizing OCD. It can make it seem like these symptoms are normal and nothing to worry about. It can encourage someone to think that this is just something everyone goes through, rather than a serious mental illness. This is dangerous because it results in people not recognising that they have a mental illness which they need to seek treatment for. They may carry on with their lives, battling their symptoms and thinking it’s normal or ‘just a quirk’.
OCD doesn’t just ‘get better’ on its own. If people don’t seek help, they are left to try to cope alone, battling their symptoms with no end in sight. Nobody should be in this situation when there are effective treatments available which can help them to overcome their OCD.
Making it hard to identify someone in need of help
Jokes and lighthearted remarks can make it difficult to tell if someone really needs help. In a social situation, if you’re used to joking about OCD and someone mentions their OCD in a bid to bring it up in conversation, you’re far more likely to dismiss it as them being funny rather than to take it seriously. This could leave someone who really needs help feeling lost and alone. If the first time they’ve tried to reach out for help they aren’t taken seriously, they may not reach out for help again.
If someone with OCD is given the wrong diagnosis, they are also likely to be given the wrong treatment. The wrong psychiatric medication or psychological treatment could worsen their OCD symptoms. If they are trying their best to engage in treatment fully and see symptoms actually getting worse, this can also make an individual lose faith in treatment. They might not engage fully in treatment again when they do get the correct diagnosis, which in itself can make treatment unsuccessful.
This 2020 article summarizes that research into the topic has emphasized these negative effects on treatment: “Research has shown that stigma is one of the leading risk factors contributing to poor mental health outcomes. Stigma leads to delays in treatment. It also reduces the chances that a person with mental illness will receive appropriate and adequate care.”
Discrimination due to mental illness refers to an individual being treated differently and unfairly because of their mental illness. Stigma and misunderstanding about OCD increase the chances of people with OCD being discriminated against. They might be treated unfairly at school by teachers or other students; they may be discriminated against in the workplace; they could be discriminated against in shops or when dealing with finances; the list goes on. Discrimination not only affects a person emotionally, potentially making their OCD even worse, it also makes their life much more difficult. They might miss out on opportunities and may struggle to live the life they truly want and deserve.
What can we do about it?
We know just how significant the stigma around OCD is and the impact it can have, but what can be done about it? Fundamentally, there are vital changes in the health, media, and education systems that need to be made. We need to educate children about mental health at school. The media needs to do their research and ensure that they are using accurate mental illness representations.
Perhaps most importantly, medical professionals need more education and training about mental illness so that they can better understand and support their patients. This study on OCD misdiagnosis concluded: “Elevated OCD misdiagnosis rates and the impact of incorrect diagnoses on treatment recommendations highlight the need for greater training regarding OCD symptomatology and empirically supported treatments.”
Things are gradually changing for the better, and hopefully, this positive change will continue. The good news is that there are things we can all do to play our part in tackling the problem, whether we have OCD or not.
Everyone can help to fight misinformation and misunderstanding by actively educating themselves about OCD. It’s important to find accurate, reliable resources. You could read blog posts from personal experience; read articles like this one; read books; watch videos; watch documentaries; listen to audiobooks; or listen to podcasts. There is so much information out there if we look for it. By educating ourselves, we break down that misunderstanding for ourselves and potentially for others around us.
Use appropriate language
Unless you have OCD yourself and are happy using humour with loved ones, ensure you use appropriate language when talking to others about OCD. If you don’t have OCD, by using the correct language you are helping to make the world a more understanding place for those who do suffer from the disorder.
If you hear someone making a joke about OCD, using it as an adjective, or saying something incorrectly, speak up (if you feel safe doing so). You can explain, in a respectful way, why this is so damaging. The more people speak up, the more we can correct this stigma. Even if people might not always listen, there’s always a chance that your message will resonate with someone.
Tell your story
If you have OCD and you feel able, telling your story can help to educate others. You could speak to those around you; write a blog; talk about it on social media; or make videos about it. Anything you feel comfortable with adds your voice to an army of people with OCD trying to break down those barriers. If you have a loved one with OCD and they are happy with you talking about it, you can also get involved in telling your own story.
Advocate for ourselves
If you have symptoms of OCD, even though you shouldn’t have to, you can help yourself to get the right diagnosis and treatment by advocating for yourself. You can do this by being informed, calm, and persistent in being referred for an appropriate mental health assessment. You can take someone with you for support. You can also keep notes and ask for copies of your medical records so you can keep track of what is being noted about you. If you feel you need it, some mental health charities can help you to advocate for yourself. Don’t give up, fight for the help you deserve.
The Center for Anxiety & OCD in Orlando, (2020), “OCD – Misunderstood and Misdiagnosed”. Groundwork Counselling.
NHS, (2019), “Psychosis”.
Stacey Barber, (2018), “10 OCD Misconceptions”. Happiful.
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Lewis, Devine (2019) “Mental Illness Stigma,” WRIT: Journal of First-Year Writing: Vol. 2 : Iss. 2 , Article 5.
Kimberly Glazier, Matt Swing, Lata K McGinn, (2015), “Half of obsessive-compulsive disorder cases misdiagnosed: vignette-based survey of primary care physicians”. J Clin Psychiatry. 2015 Jun;76(6):e761-7.
Phoebe Kranefuss, (2019), “Why is OCD so Often Misdiagnosed?” Nocd.
Beyond OCD, (2019), “Disorders That May Co-exist with OCD”.
Paul Taylor, (2015), “Why OCD is so misunderstood”. Your Health Matters.
Jenev Caddell, PsyD, (2020), “What Is Stigma?” Very Well Mind.