In January I had an appointment with my GP to discuss some problems I’d been having with my mental health. I’d been struggling for some time, but never thought my problems were ‘bad enough’ to seek help; often I didn’t see my problems as problems at all. Within the appointment I summarised my main symptoms, which all seemed to fit into three categories: OCD, ‘eating problems’, and ‘emotional problems’.
While I could talk about my OCD symptoms, as long as the conversation stayed clear of intrusive thoughts, I found talking about my ‘eating and emotional problems’ far more difficult. Why? Because I had no formal diagnosis. I could talk about having OCD far more comfortably, because a specialist had validated my feelings and behaviours. They had formally diagnosed me with OCD; for me, this was one and the same as someone telling me I was allowed to feel the way I was feeling. To me, not having a diagnosis may as well have meant not having a problem.
Even now, though I’ve talked to my friends about my disordered eating, I can never refer to eating disorders around them without cringing. I actively avoid saying ‘eating disorder’, even if I’m referring to the topic as a whole, or a person aside from me. I’m always so scared of implying that I think I have an eating disorder; the idea makes me incredibly anxious. This isn’t because I’m scared of having an eating disorder; rationally I know that my relationship with food remains the same, whether or not this relationship is labelled as a disorder. It’s not something I’m scared of: I either do, or I don’t.
Instead, I’m scared my friends will think I’m being melodramatic, or attention seeking by diagnosing myself with such a stigmatised disorder, when I haven’t even seen a specialist yet. I’m scared that, because they know me and my symptoms reasonably well, they’ll secretly confirm my fear: I’m not sick enough, and I’m a bad person for even thinking my relationship with food was bad enough to go to the GP.
I had started using the phrase ‘emotional problems’ for a similar reason. It was a way to encompass a range of other symptoms that I didn’t want to discuss directly. It was a way of referring to intense mood swings, chronic emptiness, self-harm, and suicidal thoughts, without having to admit to them. It was a way of saying ‘I’ve done a lot of research and I’m pretty sure I have borderline personality disorder, but I’m scared you’ll think I’m just an emotional teenager; I’m scared you’ll think I’m telling you how to do your job, and maybe nothing is wrong with me at all’.
My BPD self-diagnosis
For years I’ve been struggling with symptoms I’ve always put down to being an extremely passionate and sensitive person. These symptoms became amplified when, two years ago, I began to experience severely low episodes. It was during this time that my true ‘eating problems’ began and my OCD’s overt compulsions resurfaced. I was struggling, but I didn’t know what was wrong or how to stop it.
In November 2019 I self-harmed for the first time and it was then I realised I needed to do something about the way I was feeling, but I simultaneously didn’t want any help. While I knew what I was doing wasn’t healthy, I still didn’t consider it as ‘self-harm’, since the damage wasn’t ‘bad enough’ and I wasn’t ‘that kind of person’. But my emotions were exhausting me, and with medical school interviews and A levels approaching, I knew I needed to sort myself out.
I began researching my symptoms and came across many helpful online mental health resources. They suggested a variety of disorders, but none of which described what I was experiencing. Then I read about borderline personality disorder (BPD), and everything suddenly made sense. Reading about BPD was like reading about myself. Not only were my problems listed as symptoms of the disorder, but it described other symptoms I was experiencing, that I’d never given much thought to (e.g. splitting- everyone does this all the time, to everyone, right?!).
I spent the next month or so researching BPD in more detail. I spoke to my closest friends about the disorder, but I was very self-conscious. Half the symptoms listed I’d never discussed with them before- would they think I was lying? Faking? Attention seeking? Was I doing those things?
The fluctuation between ‘I definitely have BPD. Without a doubt. I’d bet my life on it’, and ‘there’s absolutely no way I have BPD’, continued up until and long after I saw the GP. Thus, the word ‘BPD’ did not leave my lips once, to any of the mental health workers I spoke to.
My logic was: if I have BPD, they’ll figure it out; telling them will only make them doubt me. The lack of validation from not being diagnosed with any disorder would put me off discussing it; but the fact this was BPD, a personality disorder, meant I definitely didn’t want to discuss it. In the mental health community personality disorders are not often discussed, and sufferers have a bad reputation; their symptoms are not easily romanticised, so they are excluded from the conversation altogether. BPD sufferers are seen as toxic, manipulative, attention seeking, aggressive, and dangerous; what’s more, they’re considered “untreatable”.
These assumptions are false and deeply damaging; it hurts to go onto Google and see entire books written on how to “survive” a borderline, how to break up with one, and how they ruin your life. Some mental health workers refuse to work with BPD sufferers altogether. It was a combination of these factors as to why I decided not to mention BPD.
The problem with not disclosing what I suspected was wrong, was that I always felt misunderstood. It was incredibly difficult to describe how I was feeling, and excruciating to know there was a word out there that described my feelings and experiences entirely. I was bombarded with follow-up questions that implied they were suggesting depression and anxiety. Even if depression and/or anxiety were likely, I still didn’t feel they explained all of what I was experiencing.
A psychological therapy centre was recommended to me, but it was one that specialised in mild anxiety and depression. In contrast, for my ‘eating problems’, I was referred to an ED clinic at a psychiatric hospital. I found the difference in how they approached my ’emotional problems’ and ‘eating problems’ interesting. Why didn’t they seem as concerned about my ’emotional problems’, when I felt it was these that were causing me to self-harm? My guess is, as an 18 year old girl, ’emotional problems’ were seen as a sign of being sensitive and hormonal, which for my age and gender is normalised; the same as having body image issues and eating disorders, for my age and gender, is normalised.
Where am I now?
Because of the coronavirus pandemic, the services of the ED clinic have temporarily closed, and I have been placed on a waiting list to be seen for an initial examination. This means, like many others, I feel in a state of limbo. I’ve taken the steps to ask for help, but I am not yet receiving any. Lock-down has worsened a lot of my problems, and it’s also significantly blocked my access to support and treatment.
It’s also given me the time to doubt myself and question whether there is anything wrong at all. I fluctuate between feeling like I’m desperate for help and need it now, and feeling like I’m dramatising everyday thoughts, feelings, and behaviours. This results in hours and hours of self-doubt and repeated questioning: Is it really that bad? Maybe I’m just attention seeking.
I just need a diagnosis I tell myself. Or for someone to tell me I don’t need one. I just need to know what’s wrong with me, or if anything is at all.
While lock-down has given me the time to question my symptoms and become increasingly self-critical and doubting, it’s also given me the time to question why it is a diagnosis is so important to me. Why am I struggling without a diagnosis? This has been the inspiration for this post…and here are my thoughts.
Why is a diagnosis important?
This entire post focuses on diagnosis, whether this be self-diagnosis or a formal one given by a health professional, and so relies on the premise that diagnosis is important. This I believe to be true.
A diagnosis is important when it comes to both clinical, professional treatment (when the patient has access to specialist health professionals), and when it comes to self-help, treatment, and support (when the sufferer has to self-diagnose). It’s impossible to help a patient, or to help yourself, when you don’t know what the problem is. This isn’t to say that where there is no diagnosis, there is no problem (this is certainly not the case), but the kind of treatment offered, or the kind you should seek, could vary enormously depending on whether or not there is a diagnosis.
A diagnosis is often desired by sufferers, because it’s an important step that gets them closer to recovery. A diagnosis is desired, when and because it’s required. I often worry that it seems I want a diagnosis, because I want something to be wrong with me. But this logic simply makes no sense. My problems, whether they warrant or receive a diagnosis, are still there. Symptoms remain whether or not they are labelled, but a label is often helpful when it comes to receiving treatment.
Why am I struggling with only a self-diagnosis?
The obvious reason is because I am receiving no treatment. I can diagnose myself with BPD, but this doesn’t help when it comes to living with BPD, if I’m receiving no clinical support. Though there are self-help resources out there, which are often very helpful and can be used to recover from some disorders, professional help is undoubtedly superior (assuming, of course, they’re good professionals!).
However, a formal diagnosis is a privilege. This is something I’ve only recently realised; I used to think that if you needed one, you got one. Unfortunately, for a lot of people this isn’t the case. Having access to a diagnosis is dependent on many factors, including social class, ethnicity, age and gender. I do recognise this, and we should be actively working to remove this inequality.
This was part of the reason I set up my blog and Instagram account. I know many people do not have the privilege of a formal diagnosis and are receiving no professional, clinical treatment. This community, of Instagram accounts and mental health blogs, is a vital support system in many people’s recovery. I wanted to be a part of that.
This is why I felt the need to discuss the struggle of self-diagnosis. Although formal diagnosis and treatment should be preferred, it is undoubtedly possible to self-help your disorder, and in some cases achieve recovery. But, at least in my experience, part of the struggle of self-diagnosis is not necessarily always the lack of treatment. It’s the lack of validation. This is one of the reasons I’m struggling with my symptoms of BPD and disordered eating.
Validation in mental health
Our mental health impacts every part of our lives. It affects how we perceive ourselves and the world around us, and thus how we engage with our environment. It affects who we consider ourselves to be, who we appear to be, our relationships with others and with ourselves. Therefore when we experience problems with our mental health, it impacts these same areas.
Our mental health affects our inner world, and thus is inherently private. Though we may exhibit symptoms that are physical and therefore visible to others (e.g. physical symptoms of anxiety in an anxiety disorder) we have a unique insight into how we think and feel- because only we directly experience our thoughts and feelings.
Not only do we have a unique insight into our own mental wellbeing (compared to a loved one, professional, or society as a whole), we often have the only insight. Mental health disorders are often invisible; they don’t have a look. The media tries to romanticise particular mental health disorders to fit their profitable narratives: a person with anxiety always looks anxious; a person with depression always looks depressed; a person with OCD is always completing visibly obvious compulsions; a person with an eating disorder always looks thin.
This suggests that mental health can only be taken seriously if it’s physically visible. People only believe you have a mental health problem if they can see it; if it crosses the border from mental health, to the plane of socially acceptable physical health; if you look anxious, depressed, thin, obsessive and compulsive. No wonder people start to express their emotions physically, such as through self-harm and disordered eating behaviours; amongst other reasons, for some it is a way to show others their emotional pain physically.
But because mental health disorders are often invisible and inherently private- only we have access to how we think and feel- it means we have to trust our own experience of our inner world. We have to validate our own emotions; we can’t turn to someone else to ask them how we feel.
Unfortunately, many of us find validating our struggles incredibly difficult. With physical health there’s a degree of objectivity- the problem itself or symptoms of the problem are often visible- and so validation is given immediately. However, with mental health it involves us communicating how we feel, and opening up about our inner world. People have to trust how we say we feel; they can’t just look at us to confirm the problem for themselves. This provokes a degree of scepticism from those who are uneducated- could the person be lying or exaggerating? Non-sufferers can’t relate to the feeling, and they also can’t see it, leading them to doubt whether the problem even exists.
Low self-esteem and intense feelings of inferiority are common symptoms of many mental health issues, so it would make sense for sufferers to doubt their emotions and deem themselves as being “melodramatic”. Some may have experienced childhood trauma and/or abuse, where they may have had their emotions dismissed and repeatedly invalidated. Society’s dismissal and sceptic approach to mental health may then be internalised- ‘am I attention seeking?’, ‘am I faking?’, ‘is there really anything wrong with me?’.
Because our mental health impacts things that are inherently wrapped into who we are as people (e.g our values, our decisions, our relationships), it is assumed that our mental health is under our control, like our values, decisions and relationships are when we don’t have a mental illness. We can decide to be sad/anxious/dissociate/hallucinate, and we can similarly decide to not be or do those things.
The onus is put on the sufferer to justify what they’re feeling and experiencing, and why they’re feeling and experiencing it. Because mental health disorders are misunderstood, people approach them with their rational, logical, i-don’t-have-this-mental-health-disorder-so-i-don’t-know-anything-about-it head. This leads to advice that is deeply invalidating: “just be positive and find the silver lining”, “just eat”, “just don’t think about it”, “just don’t touch it”, “just stop”. From my experience, it can make you feel like you’re not doing something incredibly obvious; it emphasises the view, of which many already hold, that there’s something inherently wrong with them.
For some, a diagnosis is the validation they’ve been lacking. The inability to validate their own thoughts and feelings, simply because they think and feel them, means an external source of validation is required. Society’s perception of mental health and illness means this validation is not often given, leaving sufferers questioning their own reality. It means many don’t ask for help; thus, people get sicker and sicker. In many cases this is deliberate, because the need for validation is so intense, self-destructive behaviours are used to gain the validation of others.
If you’re reading this and can relate to this mentality, I understand. I understand what it’s like to not feel sick enough, to want people to know how much you’re suffering, but to feel immense and sickening guilt for needing people to understand and notice you. To feel the intense need for someone to tell you what you’re experiencing is difficult, that it’s not your fault, and that it’ll always be bad enough to ask for help. And if diagnosis is something you glorify, as I often do, you don’t need to feel guilty about it. It doesn’t mean you want something to be wrong; it means there already is something wrong, but you just want someone to notice, and to help you.
I offer you advice that I don’t extend to myself, but someone needs to hear it. Whatever you’re feeling is inherently valid; whether or not you have a diagnosis. Whether or not your family or friends have noticed something’s wrong.
Validation in mental health is something I discuss frequently on my Instagram, so make sure to follow me there.
I’ve taken a while to post this, as I’ve been quite low this week and have found it difficult to get anything done. I’m trying to find motivation, and will hopefully get back on top of writing!
I hope you’re all having a lovely day 🙂