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Self Forgiveness After the Storm: how I Learned to Live a Better Life with BPD

TW: mentions of self harm and suicidal thoughts/actions

At the best of times, the symptoms of borderline personality disorder (BPD) are like listening to rain gently tapping on your bedroom window; you know it’s there and that it’s probably going to continue to rain for a while, but it’s not necessarily distressing and the noise can easily pass you by. 

At the worst of times, it feels like the rain has poured through a gap in your window and is filling up your room while you’re struggling to keep your head above the water. 

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How Lockdown Helped Me Reclaim Activism As a Disabled Person

Tw: prison, prison cruelty, corporal punishment, police brutality, murder, eating disorders and mention of the Sarah Everard case.

I love learning about the Suffragettes. About how the name was originally meant to be an insult to them and they took ownership of it. About how their actions lead to my right to vote. About their ownership of green, purple and white. And I can’t thank them enough.

I even try to educate myself about the not so nice bits. Death and destruction. Poor Emily Wilding Davison under the King’s horse. And Holloway prison. Awful conditions. Hunger strikes and force feeding. And I shudder.

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We Need Accessibility This Mental Health Awareness Week, not Pretty Speeches

Trigger warning: this article mentions suicidal thoughts and suicide, in particular the deaths by suicide of Robin Williams and Caroline Flack.


The moment I opened my Twitter feed on Monday morning, I was greeted by the hashtag I’d secretly been dreading: #MentalHealthAwarenessWeek.

This isn’t because I’m against raising awareness, quite the opposite, but I emphatically dislike the way in which lip service is paid to mental health rather than genuine support. Most of the people I see on my socials share the same disillusionment. We’re tired of being told to reach out when in need, that everyone understands, only to be met with indifference when we act on this.

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I’m Struggling Through my Latest Lupus Relapse – and That’s Okay to Admit

Today is World Lupus Day, on this day I usually spread awareness and my own story but this year it feels different. After mostly being in remission and only getting the occasional flare for the past six years, my Lupus is relapsing and I’m feeling the affects much worse than I had.

This year I’ve been diagnosed for exactly half of my life, and as many with chronic illnesses, I was ill for a long time before that. I don’t remember my life before Lupus. That being said I was only 16 when I diagnosed with Lupus, meaning that it was an unbelievable life change for me and made life massively restricting for me. So understandably I struggled to accept the limits of my body and pushed myself far too hard.

My late teens and early 20s were spent passing out drunk from not accepting that I couldn’t drink as much as my peers, this happened at least 3 times a year. It’s actually quite shameful to think back on it now. I also worked myself far too hard and then gave up and failed a lot because I was afraid to ask for help and looking like I couldn’t cope.

I held a lot of deep rooted ableism and was determined to overcome my illness. I didn’t realise that disability is a long game and it can’t be beaten.

The way I always describe Lupus to people who don’t know is “my immune system can’t tell what it should be fighting so attacks everything in my body. Basically my body hates me” I laugh when I say this but it’s true.

There’s no part of me that hasn’t been affected. Hair loss, eyesight, skin rashes, mouth, nose and throat ulcers, arthritis in my wrists, hands, feet, ankles and knees, osteoporosis in hips, migraines, fatigue, sickness, bloating, UTIs, kidney and liver problems. There’s also light sensitivity, fainting if I get too hot, brain fog, heart murmur, risk of blood clots and mini strokes.

It took a lot but in recent years I’ve come to terms with my illnesses and disabilities and I’m grateful to have a platform that also empowers others to do the same. That’s why it’s harder to admit that I’m struggling to accept my illness again.

In February, after 18 months of medical menopause, I had a bilateral oophorectomy (both ovaries removed) to go with my hysterectomy in 2017. I almost instantly went into full menopause and this unfortunately triggered a Lupus relapse.

After getting used to how my life was with Lupus and building my life around that, it’s been galling to have to adapt it even further.

I was used to regular aches and pains but now everything hurts. I’m starting to use my cane more again, and while I’m not ashamed of being a cane user it makes my disability very visible to others and I see a change in how they treat me. I become someone they need to treat with kid gloves.

I know this image is mostly in my head and my cane means freedom, but the pain is the exact opposite.

I already work from bed a lot of the time because working from my desk is too exhausting, but now I find it almost impossible to work without a nap. The fatigue is the hardest part, it’s all encompassing and stops me from doing everything.

The most upsetting part was when I started losing my hair again, my hair is a big part of my identity so to be losing it was devastating. Up until last week I had long ginger and red hair down past my boobs, but I made the decision to get it cut up to my collar bone. I feel more like myself with it like this and I also don’t have to see such long strands of hair coming out.

The main difference is now though that I’m older and (mostly) wiser, I know my limits and I’m not ashamed to admit when I need help or afraid to say I need a break. I’m lucky to work from home and work for myself, which means I can set my own hours and only work when I need to. However it also means I’m in charge of taking time off which any freelancer will know is easier said than done.

As a disability activist, journalist and of course editor of this lovely place, it’s difficult to be wrestling with my own negative feelings around my worsening illness, but I know it’s not something I have to work through alone.

To be honest, having Lupus is sh*t and I hate it, but I can’t change that. I don’t have to be positive while my own body is trying to kill me and I shouldn’t be expected to.


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How my Chinese heritage made me feel ashamed about being disabled

Disability and mental health; these two concepts stimulate a huge amount of taboo within the Chinese culture. Growing up, these were rarely discussed and on the rare occasion that my parents or other adults did mention them, it was always with a negative undertone and conveyed the message that these individuals were somehow weaker and less deserving.

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Pain Chronicles: Rosie Jones and Straddling the Intersection

Pain Chronicles is a new monthly(-ish) column from Caroline McDonagh-Delves about coming to terms with living with a chronic illness. It will include funny stories and brutal honesty, with some thrown in chats with her mum Shaz, and other friends too, along the way.

Rosie Jones and I have a few things in common. We’re both Northern. We’re both pricks. We both have gigantic tits. And we’re both disabled lesbians.

And when I saw her walk on to the set of The Russell Howard Show and said she couldn’t process those ideas, she could only fit one “different” thing in her life, and therefore she believed she wasn’t gay, I understood where she was coming from. Sort of.

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Mask Exempt Disabled People Have the Right to Shop in Peace

Almost 25% of the British population are disabled, not every disabled person is required to shield, or may be mask exempt, but myself and millions of others are. So we should be entitled to exercise that right without fear of repercussions.

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NICE’s Worrying New Chronic Pain Guidelines

It’s the summer of 2012. I am still at university, using the very last of the term-length pool membership I’d bought. I swim 2 miles. That’s 128 lengths of a 25m pool. The walk back up to the main campus is hard, steep and my bag is heavy with my wet costume. I collapse onto my bed. My hands hurt, but four or five doctors can’t tell me why that is. My knees hurt, but after three doctors, I saw one specialist who said it should clear up by the time I’m 20, which I turned last month. I swallow a dihydrocodeine and sleep for 8 hours.

The NICE guidelines released on 7th April recommend analgesics not be used for primary chronic pain. What they do recommend is exercise, antidepressants, acupuncture, and psychological therapies. Paracetamol and ibuprofen, possibly some of the most widely taken drugs outside of penicillin, that usually cost about 20p for a box of 16, they also can’t recommend. 

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I’m not Responsible for the Misconception That all Disabled People are Asexual

There wasn’t much time between when I realised I was asexual and when I was diagnosed as autistic – only around a year. Ironically, the first person I ever came out to was a therapist I only saw once, when I originally began to fall into the mental health crisis causing the realisation that I was autistic. It’s been six years since then, and I’m still asked – or alternatively told – whether the two are one and the same.

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As a Deaf Person I Feel More Excluded Than Ever Before in the Pandemic

In the time before Covid, being deaf in a hearing world was tricky, but manageable. Those of us living with hearing loss found ways to handle our interactions with hearing society, be that technology or interpreters. For the most part we vaulted our hurdles as naturally as walking. It meant adaptations and hard work but, in the main, we got along with the status quo.

But then the world changed with the arrival of Covid-19 and entirely new hurdles presented themselves; tall, mighty and unmovable. Our strategies had to adapt, and we were going to need help. 

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