My story: Tesni

Tesni on her wedding day

Tesni on her wedding day

As part of Mental Health Awareness Week, we're helping share the stories of people with mental health conditions and also people who have invisible disabilities who have seen an impact on their mental health. Today, we speak to Tesni, 33, from Wales about her story: 

"It all started when I was nine years' old; when I developed Fibromyalgia.

I wasn't able to keep up with the other children at school, I struggled walking home and I would fall asleep on my lunch box during my lunch break. Understandably, my mum was worried; I had gone from being a hyperactive child who spent all her time running around with animals on our smallholding to constantly being tired and in pain. She took me to our primary care doctor (GP) who would spend the next four years putting me through a barrage of tests trying to find out what was wrong with me.

It was at 13, I was sent to see a specialist for Myalgic Encephalomyelitis (also known as M.E). I was in the hospital for a week, on a 500-calorie-a-day diet. At the end of the week, he told me there was nothing wrong with me; I was fat and lazy. From then on, I was on a 1,000-calorie-a-day diet and pushed myself harder.

In my mind, everything was my fault - the tiredness and the pain - and I needed to pull myself together. Everyone else could do it, so why couldn't I? To this day, I still struggle with this mindset.

My GP, still convinced that I did have M.E, put me on anti-depressants. By this time, I was also struggling with anxiety and depression, but neither of those things had been discussed with me and I didn't know how to talk about them. After five months, my mum got a panicked phone call from our GP telling her to take me off the anti-depressants right away as they had been linked to suicide.

At 16, I was finally diagnosed with Fibromyalgia, but by this point, I wasn't listening to my GP. I didn't hear him carefully explaining to me what I had was not M.E, it would never go away and that I had to learn to manage it or it would slowly take more and more away from me. I was convinced that I could live my life like everyone else; I just needed to push harder. I still thought one day it would go away if I could just sort my head out. Around this time, I started to self-harm. At first, I did it for the release. Then I did it because I was angry and frustrated, and it was the only way I knew how to express myself.

At 18, I left home and got my first job, working in a mental health care home. I was so out of my depth and got horribly bullied there because I wasn't able to cope with the physical demands. A senior member of staff even took my then boyfriend, now husband, to one side and told him I was making it all up.

He said he had worked with people with M.E before and there was no way I had it and I was just saying it so I could get away with being lazy.

At 20, I became pregnant with my son and I couldn't cope. I didn't manage to quit smoking until I was four months pregnant. I got awful pre- and post-natal depression (PND) and couldn't bond with my son when he was born. I struggled on for two years like that until I had a conversation with a friend about her PND, which got me to finally go to my GP and I reluctantly tried anti-depressants again. Luckily this time they worked for me.

Slowly over the years, I've addressed the fact that I don't have M.E and that I have Fibromyalgia (despite being told by my GP that I should "just pick whichever title I want" as they were just "terms we use when we don't know whats wrong". I've finally accepted that it will never go away, and I've learned about my condition and how to cope with the pain.

Of course, I still struggle. There have been moments that have broken my heart. Like not being able to hold my son's hand because the pain in my hands was too much to bear. Having to accept that I couldn't have another child - my health had become so bad that I felt I couldn't give my son the attention he needed so it'd be unfair to have another. There have been times I've felt stripped of all dignity; having to apply for Disability Living Allowance and Personal Independence Payment; having to lay bare all the things I struggle to do and how dependent I am on others, so that someone can come and judge me to see if I score enough 'sick person points' to be given the benefit need to have any quality of life.

Being called lazy will always rip me apart inside. I'll always hide how much I hurt and how tired I am. But slowly I'm getting my head around the fact that it's not my fault and it's not because I'm weak."

If you've been affected by Tesni's story, please drop us a line using the contact us page. 

We want to hear from you

For Mental Health Awareness Week 2018 (14-20 May), we will be featuring stories about people across the UK with invisible disabilities to help raise awareness and remove the stigma. Each day on the blog and our social media channels, we will be publishing first-hand viewpoints from followers and friends of The Calm Room, in the hope that it will inspire people to engage, offer support and encourage and discuss their own conditions.

We will also use this opportunity to launch our weekly newsletter, so keep a lookout for the subscriber link so you can keep up to date with everything Calm Room related. 

If you would like to feature on The Calm Room and tell your story, please contact us. If you have any questions about our other services, please don't hesitate to get in touch.

Why do we think our brain doesn’t get sick?

I was inspired to write this article following a LinkedIn connection sharing this post: Over two thirds of employees feel uncomfortable telling colleagues about taking a sick day for mental health reasons.

Even though mental health is across our news platforms, our social media and our non-media organisations (guess who I’m talking about…!), it still has a stigma.

I mean even the Royal Family is talking about mental health and we still don’t seem to get it… yet we all go nuts for the Royal Wedding.

It astounds me that we discredit mental health when it comes to sick days. I’ve heard it all: “She’s faking….”; “He’s lazy…”; “She’s just making it up…”; “Ugh, signed off with stress again…” The list goes on.

So I wanted to use this post to remind everyone of this: without the brain, we’d be dead. Morbid, I know, but it’s true.

Our heart might beat, or lungs might breathe, but without the brain we are not alive. There’s a reason we cannot do brain transplants yet (we probably will one day soon); it does everything. It’s like the control centre for our body; that’s why it’s called a ‘whole-body transplant.’

The brain works the hardest out of any organ in the body. So why do we only take days off for a cold or broken leg?

Do people assume that holidays are for that, you know, like we plan when our brain is going to be tired or sick? Can you imagine saying the below?

“Oooooo, I think I’m going to generate a panic disorder on the 23rd July… let me take some holiday…”

“Hmmmmmm, I reckon my OCD is going to flare up on the 25th April in 2018… best check that nobody has that week off already….”

“Oh my, Capricorn is going to be aligned with Virgo in 2020… that spells bad news for my bipolar disorder…”

OH MY GOD, NO!

So to anyone out there who’s worried about being perceived as weak (I’m with you, by the way), or condemed to “not being up to the job” or “can’t handle the pressure”, just remember that your brain does a lot of work outside of office hours.

So, let it have a break when it needs it.

Stop using the term ‘political correctness’

This morning, I was watching The Wright Stuff on Channel 5 and the following subject came up: “Is age a defence against making dodgy comments? If someone who is elderly makes the odd racist or sexist comment, should we let it go or have a go?”

I expected a healthy debate amongst the panel — not just about older people, but society as a whole. However, to my surprise, they were all in agreement that offending people, whether it’s intentional of not, should just be let go.

Then the host, Matthew Wright, took calls from the public (all two of them). I assumed that there would be differing opinions on the topic. But no, both people said near enough the same thing (with the second caller discussing what he saw as the difference between political correctness and homophobia).

This started a discussion in my living room. To give you some context: I suffer with general anxiety disorder, depression and I’m blind in one eye; my dad is a type 1 diabetic; and my sister has Asperger Syndrome. All of us, at some point in our lives, have faced discrimination from our peers, colleagues, family and strangers.

Sometimes, this discrimination can take the form of name-calling. But, and more often than not nowadays, it can be disguised as “banter” or just used against us in professional and personal settings to put us down.

A really good example is a joke that my dad heard on the radio: A comedian asked the audience if anyone was a diabetic, and when someone responded saying “I’m a vegetarian”, the comedian responded “The same thing.”

For my dad, this was not only a ridiculous thing to say, but it was also quite hurtful. It belittled what he goes through on a daily basis. His illness isn’t a choice. So to be compared to a vegetarian, was a shock. And as he rightly pointed out this morning, sometimes you can let comments go over your head and you can be fine, but one day you might not be in the right frame of mind and not be fine.

Which made me think: Why do we use terms that we know could hurt or disrespect people? Another good example, was on The Wright Stuff. The second caller was a male in a wheelchair. He said that an old lady had once asked him: “How long have you been a spastic for?” He had said that he wasn’t offended, because that wasn’t the intent.

Really?! Let’s be honest here, what is the purpose of that word? Well let’s ask Urban Dictionary…

Definition (UK): An incredibly derogatory term referring to people with cerebral palsy, in a similar way retarded is often used as an insult around the world.

So the purpose of the word, used by the typical person on the street, is to be derogatory. To belittle someone. To have power over them.

Regardless of the intent, why is the word even used?

And this is why I want us, as a society, to get rid of the term “political correctness.” People use this term as a way to excuse themselves and others of using lexis that is meant to offend and be derogatory. They name-call people who call them out on their bad behaviour “snow flakes” rather than be accountable for their actions.

It’s also used a lot with expression and free speech. And while someone can have an opinion, there is no room in our society for targeting and persecuting people who are vulnerable or considered different due to their gender, race or sexual orientation. Hate speech is not free speech, and we need to remember that.

So, let’s us all as a society drop the term. Let’s start being respectful to one another. Let’s use language that celebrates our differences, not undermines them.