Tag Archives: labels

What’s in a label?

Some say labels are just for cans and boxes but why do people search for years for a label for their illness or disability? Why does it feel so important?

When a diagnosis is finally reached, there seems to be a sense of relief, maybe even satisfaction! Almost “I told you so!” Sadly, before this point, people worry others think they’re faking or exaggerating their symptoms. Without a diagnosis you’re just a list of problems. Before a diagnosis, phrases like “it’s all in your head” are used and the patient feels like no one believes them. Doctor after doctor has said “hum, I’m not sure; you say you feel like this, but the tests say you don’t.”

Finally, the label means validation.

Fibromyalgia is one of those illnesses that takes years to diagnose and people feel they’re not being believed, they’re pushed from pillar to post as their symptoms get worse.

The way I was given the diagnosis of fibromyalgia couldn’t have been further from what I was hoping. It’s meant to be a diagnosis of exclusion. Ideally, you would hear “We’ve done all the tests to rule out these illnesses x,y,z… and they’ve all come back clear, this is good news. (Pause.) This means, we’ve come to the conclusion, it’s fibromyalgia. It’s good, we now know what it is because we can begin to manage it. The way your symptoms are presenting (because they present differently for each individual) we’re suggesting these treatment options…”

In my experience, there are illnesses they haven’t excluded, numerous tests they haven’t done. And the news was delivered, while prodding the joints in my hand (for no reason I could understand) “Well (sigh) it could be fibromyalgia”. That’s it, we have nothing to offer. “We might have a leaflet in the waiting room you could pick up on your way out…” they’d run out of leaflets…

Oh well, ignore how I got the label, what mattered was, I had it.

Fortunately, once I had the label, I was then able to find treatment options myself; I found a clinic in London (who only see people with a diagnosis) to get some advice; I had some group session with a physio and an OT and feel I can pro-actively manage the illness myself.

Reactive vs pro-active management

Understanding without a label

“But as long as we understand the difficulties, we just need to make sure individuals get the support they need.” Said a well-meaning nurse to me recently.

Understanding difficulties someone has and the support they need takes time and effort most people are unwilling to give. Understanding what an individual really needs takes knowledge, skills, expertise and often wisdom that most people just don’t have.

Why a label matters

With a diagnosis you get treatment options – before the point of diagnosis you’re crawling down a corridor of shut doors. At the point of diagnosis, a door finally opens. You’re finally allowed to enter the world of your given disorder and explore the “options”. All you’ve every wanted are “options”, that magical word! There may not be many, but before now, there haven’t been any!

Un-diagnosis can be lonely, with a diagnosis you can often find a community of people facing similar struggles, the support can be there if you want it. In this digital age we have forums of people literally at our fingertips. Just type your diagnosis in Google and there’ll be a Facebook group if nothing else! Sometimes giving support can be just a therapeutic as receiving it.

The mental health community is full of people who say “I don’t have a diagnosis but can I join…?” Of course, you don’t need a label to join but most people find it helpful to know for sure which label fits.

Sometimes the label changes

Sometimes clinicians get diagnosis wrong. Sometimes illnesses change. Sometimes diagnostic tests change or medicine gets smarter. For one patient this could be a traumatic and confusing process, for another it might be liberating.

Without a diagnosis, you may feel like a list of unknowns, more questions than answers. Why do I feel like this? Why do the tests show this? Who am I? What am I? Why is this? Things that don’t make sense and things that don’t add up. With a diagnosis there may still be lots of questions but some of them may start to have answers.

Your illness, disorder or disability doesn’t have to define you, that’s a choice, but a diagnostic label simple helps things make sense.

Is it a diagnosis, a label or an identity?

I’ve had a number of conversations over the years about the language used around mental illness – it’s complicated matter, made more complicated by people not knowing the power behind their words.

“I am not my illness”

A gentleman I cared for explained he detested being called “schizophrenic”,  because, he explained “you wouldn’t say someone is a cancer”. What he was trying to express was that he is not his illness, he did not identify with his illness, he did not want to be labelled in this way and I really respected this.

Even professionals use words derogatorily

If I said someone “is diabetic” I would not have any opinion or judgement on their personality or any other characteristics. However, I recently heard a paramedic say this patient “is schizophrenic” with so much power, bitterness and judgement, I could tell he was casting aspersions on this person’s character (and appeared to be suggesting he be treated as lesser in some way). I had presented my service users as a “56 year old gentleman with [a number of medical complaints] and schizophrenia” as information that may lead to conclusions about the current presenting complaint. While one person may be able to say someone “is schizophrenic” without any preconceived judgements, this paramedic was not one of them.
Stigma in society is strong, it’s people who are being stigmatised that suffer, those doing the stigmatising don’t realised a subtle language change could have a powerful impact. With this small change, a person is not labelled as their illness but someone who has an illness.

“I am more than my illness”

Mental illness can have a negative impact on one’s identity. When I was diagnosed with anorexia I could have let this be my identity… i could have felt, I am not Frances anymore, “I am anorexic”. I have seen people so consumed by their illness, they may as well say “I am anorexia” – I am not a person anymore, I am an illness. But I did not want to label myself in this way, although it was true I was “anorexic” I preferred to see myself as “a person with anorexia”, then my character and personality traits could exist alongside my illness.
It has been proven that assumptions about what it means to be mentally ill such as incompetence and inadequacy (commonly held) will lead to a vicious cycle of impoverished sense of self and low self esteem, ceasing to try and work or fit into society and poorer psychosocial outcomes and sustained symptom severity. (Read the full article here.) It follows that, if you identify as your illness, you identify as incompetent and inadequate, whereas if you consider yourself to have an illness, you are not your illness, you can distance yourself from these negative characteristics.

Of course, this is down to the individual and if saying “I’m bi-polar” or “I’m schizophrenic” does not impact on their ability to see themselves as separate from the illness that’s their prerogative. Or, if they want to be identified as their illness, that’s also, up to them. Perhaps I’m saying, from within a mental illness it can be very difficult to see the path to recovery, how you see yourself in relationships with your illness can be the turning point. In my opinion, recovery and turning away from being consumed by mental illness is possible for everyone (recovery may not mean cure – but that’s a subject for a different blog).
When is a diagnostic label unhelpful?

I’ve had other conversations with people who think we should do away with mental illness diagnoses all together as the words can have such a negative impact on the experience. It can be very confusing when some words can be used by the general population, for example feeling depressed or anxious are valid and appropriate emotions, however, clinical depression and anxiety disorder are very different experiences, in some ways a million miles away from the basic emotion.

For other diagnoses there are other problems e.g. the use of derogatory terms, such as “schizo” which has been used to mean “unpredictable criminal”. Personality disorder is a confusing term, we think (as society) we understand what is meant by personality so if someone’s personality is disordered, surely, their core being is fundamentally altered/damaged? Well, no, personality disorders are extremely complex (usually with relational difficulties) and there is much discussion about changing the label to fit the experience better.

Of course, diagnoses are an essential part of communicating. It’s helpful if a collection of symptoms has a name so that treatment can be targeted appropriately. However, I have also had the experience of an inaccurate diagnosis being used which then had a negative impact on the treatment I received.

In the end, once I was on medication to control my symptoms, it didn’t matter what my diagnosies were – the therapy I needed was for someone to sit with me while I discovered who I was and grappled with emotions I’d never allowed myself to experience.

Language changes, this is normal

The word spastic used to mean “muscle spasms”, a common symptom of cerebral palsy – it is now an offensive term, because of how it was used, and has fallen out of use. The media may hide behind “the dictionary definition”, but if we follow this through, we can still use the word spastic, but we don’t. The “dictionary definition” of “schizophrenic” is “a person with schizophrenia” or “contradictory or frantic and disjointed” but this is as at odds with the definition of diagnosis. Many people still think someone with schizophrenia has a split personality or they are violent (which is an inaccurate belief). Continuing to use the word in different contexts perpetuates this misunderstanding of the illness.

Just hoping people think about what they say…

It’s not hard to change, “schizophrenic person” to “person with schizophrenia”.

Breaking down stigma is vitally important in a cruel and judgemental world. Not realising the power behind our words can have a negative impact on those affected by the illness by perpetuate societies misunderstanding, judgements and stigma. Even if you do not mean offence by the words you use it can have more of an impact than you realise.