'Like Jameela Jamil, I was accused of faking my illnesses. It cost me almost everything.'

A few years ago now, I learnt that some of the people closest to me were actively telling others – including my doctor – that I had Munchausen’s.

They knew, you see, because things didn’t add up.

My illnesses changed or I had symptoms that didn’t make sense.

I wasn’t getting better, and I was seeing more doctors, and the more specialists I saw, the more confusing my ailments became.

Sometimes, when sharing news about my health or whatever the latest results of whatever surgery or test I’d had, my friends thought it was weird that I seemed hopeful, or cheerful, or just too happy.

You know, like a person with Munchausen’s would.

I began to adopt a monotone when discussing my illness, tired of being labelled as ‘melodramatic’, and being questioned why I appeared positive when sharing news that wasn’t always positive (apparently, I never received the handbook on how to deal with chronic illness to make other people comfortable, and used a ‘happy’ voice to mask my own fears). If my voice was monotoned, I reasoned, I couldn’t be accused of behaving dramatically. I would just state the facts, and perhaps my less-than-happy demeanour would illustrate that yes, being sick wasn’t something I was okay with, and I was having difficulties coming to terms with the idea of being chronically ill.

All of this, I would learn, was kept from me by my friends, until my bridesmaid and former friend told me the truth: ‘It just didn’t seem believable,’ was her defence. ‘You were always sick, and your voice went funny and it just seemed weird.’

Learning that close friends believed I had a form of Factious Disorder broke me. After all, it’s one thing to think someone might be exaggerating their illness, or even a hypochondriac – two things that still would have hurt me, but something I could accept that comes with the treacherous grounds of being chronically ill. It's an entirely different thing to have your friends genuinely believe you would ingest something to cause symptoms.

It changed my entire world, my entire belief system.

It had ramifications of all kinds: Illnesses lay dormant, as I no longer trusted doctors to listen to me and believe me; I grew sicker and sicker, refusing to seek treatment because I didn’t want to be turned away; I couldn’t return to work, as when my doctor refused treating me after she’d been informed by some of my friends, I didn’t get the help I needed to recover from encephalitis.

My husband did, though, which seems to be a weird fact that everyone who labelled me as having Munchausen’s conveniently forgot: My husband also contracted encephalitis, a diagnosis that lays on his medical chart, caught from me, because I wasn’t behaving the ‘right’ way. Somehow, my husband’s illness got lost in translation, or perhaps it was inconvenient. If I really had meningitis, like I’d first stated, that developed into encephalitis, that would mean that my husband really could catch it from me.

Which would mean I wasn’t lying, and that my so-called friends were destroying me for their own fun, which would change how the situation appeared to outsiders a hell of a lot.

Unfortunately, no one has ever been able to answer that question – how the hell do you explain that the person you’re accusing of Munchausen’s appears to have a very real and contagious viral disease? – but it’s been several years now, and I lost so many friends because I was branded a liar. Calling them out on it cost me even more; after all, why should I care? It was years ago. (We only told everyone you had Munchausen’s, costing you your job, your husband’s relationship with his family, your mental health, and physical health, leaving you permanently disabled, but it was totally fair that we thought that, can’t you see it from our point of view? Or, better yet, I didn’t want to get involved in something so petty.)

Naturally, when a writer made a “case” for Jameela Jamil on her Instagram story a few weeks ago, I was triggered into a spiral of memories that involved gaslighting, betrayal, and friends asking me to be reasonable about why they thought the worst of me, with no solid evidence to the contrary.

Chances are, reading this, you aren’t a medical doctor, and you don’t have a medical degree.

If you do, then you’d know damn well you can’t diagnose someone you haven’t treated, and to try and do so is a violation of doing no harm.

Maybe you’re like me, chronically ill, maybe with an invisible chronic illness or disability.

Perhaps you’re perfectly healthy.

You want to know the truth? The real truth?

Being chronically ill isn’t like being in an episode of House. We don’t get abused by an ego-maniac medical-version of Sherlock Holmes who can fix us in under forty minutes or less (as well as a few clinic patients), making the abuse worthwhile.

Instead, we’re shuffled around to different doctors, who sometimes have differing opinions. Certain illnesses don’t always show up in every blood test; and when you’re autoimmune, like I am, you’re not only more susceptible to different viral strains, but you’re likely to develop multiple autoimmune conditions.

Seriously.

I think I have five different autoimmune conditions – some as benign as coeliac disease, others far more debilitating.

And then I think of how humiliating it is when someone makes a comment about how I’m ‘allergic to everything’ or ‘always sick’.

And that humiliation turns to anger when I see people negligently announcing to the world, that they think Jameela Jamil suffers from Munchausen’s because they’ve pieced together a story they think they know.

Side note... Claire Murphy chats to Professor Marc Feldman from the University of Alabama about 'Munchausen by internet' on The Quicky podcast. Post continues after podcast. 

The woman accusing Jamil of lying about her conditions searched every tweet she'd ever written about having a concussion, and used that as evidence she couldn't possibly be telling the truth. As I write this, I remember that, after I fell down the stairs and broke my spine, a few months later, when I was slowly beginning to recover, I fell down the stairs again, with my head going through a wall.

I didn’t just end up with a concussion. I ended up with a traumatic brain injury.

That year, I missed my best friend’s wedding, my Gramps’s funeral, and my brother’s wedding. I was too sick, and every illness I had was compounded by my traumatic brain injury, which would leave me confused and agitated.

So I write this with a plea: Please stop diagnosing people, labelling people, and questioning them when they talk about their health. If you aren’t their doctor, you have no right; you have no access to their medical files, only the things they’ve recalled.

And sometimes that recollection might be imperfect.

Think about if you’ve ever broken a bone, or had surgery (no matter how minor). Assuming it wasn’t in the past year, can you recall, with ease, what year? What month? What day?

How many flus and infections have you had? Can you recount them all, exactly? Days, months, years? Can you recount every test you’ve ever had – blood tests, ultrasounds, MRIs, CT scans? Label them with dates, without scanning through your information to be certain?

What if you’ve had more than one surgery? Was it in 2005, or 2006? Which one was in 2005? Which one was in 2006, but maybe-it-was-2007?

If I branded you a liar because you confused the years, how would you feel?

If your disease had complications that were outside the norm, and I told you, ‘My aunt has that, but it’s different, so are you sure you have Disease X?’ how would you feel?

Would you feel believed?

Or belittled?

Would you feel supported?

Or betrayed?

Would it feel like I was using minor inconsistencies to ‘trap’ you in a lie that doesn’t exist, because we are humans, and we are fallible?

What if what you contracted, or the surgery you went through, was something deeply personal, and therefore you omitted details to protect your privacy?

Munchausen’s, or Factitious Disorder, isn’t something that should be thrown around lightly. It should never be used to describe someone that you think is lying.

It’s damaging and destructive. People want to believe in the Safe World Theory (the theory that if you do everything right, you’ll be okay), which means that they’ll quickly latch onto any explanation that fits their world – after all, if you could just fall chronically ill with no cure, that could happen to you. Which means, one day, you could wake up to a world that is no longer yours; a world that’s dictated by your body, what your body can achieve, what it can’t, what it’s likely to uphold, and what it won’t.

But if the person’s lying, then you don’t need to worry about it, because it can’t happen to you.

Right?

Feature Image: Getty.

Carla Robinson's debut novel, You Know You Want It, is currently free on Kindle from the 19th to the 21st of February and is also available to purchase in paperback. Her next novel, The Light In The Darkness, a novel that tells the story of the Titanic in a way never before done, is due for release in April. To follow more of Carla's work, check out her Instagram @thingscarlaloves