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Jun 16
two images together A close-up portrait of a person with layered pastel purple hair and blunt bangs. They are wearing large gold hoop earrings and have soft pink makeup, including shimmery pink eyeshadow and glossy lipstick. The person is looking directly at the camera with a slight smile. The other photo is the same person in a leopard print blazer smiling at the camera and standing up

Amy Butterworth on….Long Covid, recovery and accepting vunerability

By Sex & disability, The Love Lounge questions, Undressing Disability

Amy Butterworth is a Long COVID activist, coach and talented writer. She is a powerful advocate for people living with Long Covid (LC), and her Instagram is a valuable source of inspiring tips and advice on managing the condition.

She shares what life was like for her before LC and what quick wins we can implement to support others.

What was life like for you pre-COVID?

I was managing a team at the Scouts, designing the programme of badges and activities, ensuring they were inclusive and accessible and preparing our young people for the changing world. I loved travelling the country and meeting groups to understand what they wanted from the programme, and how inclusive co-designing can create that.

Just before I got sick, I launched the Money Skills Activity Badge for Beavers and Cubs, which I was hugely proud of. I made sure we were co-designing with leaders and young people with different cultural, religious and neurodivergent backgrounds, specifically dyscalculia. Outside of work, I would set myself a physical challenge every year (triathlon, half marathon, boxing match), I loved going to gigs, theatre and comedy, and generally being the one you could call on to pick you up from the airport or watch your kids. 

When did you contract COVID, and what has it meant for you since then?

I got it in July 2021, and it changed everything. It was like a very exhausting flu, but after the cough went away and my sense of smell returned (ugh, that was the weirdest part), the fatigue persisted. I felt very weak, exhausted by walking, and my breath felt like hard work. My workplace was kind and patient, but I couldn’t return – I couldn’t guarantee that I could be a reliable colleague, so we had to terminate my contract.

I had to focus on my recovery and, after another year, I realised that this wasn’t recovery, it’s just how my body is now. That acceptance helped to change my attitude. I’m not ‘trying to get better’, I’m accepting this as my best, and let’s start here.

I started sharing my mindset and practical tips on Instagram in March 2024, as @longcovidrockstar, and it has really helped me make something of this experience. I’m still on the sofa 70% of the time, but now I feel a part of something, and that’s huge.

You can follow Amy at her Instagram page, LongCovidRockstar

What are some of the biggest misconceptions people have about Long Covid?

Many people just don’t understand it, and it speaks to a lot of systems that we have been living in: that fatigue is just laziness, and we’re not trying hard enough (capitalism), that it’s probably not as bad as you think (misogyny), or that we are choosing to live like this (ableism). We struggle with the concept of ‘chronic’ conditions because that narrative is ‘you get sick, then you get better’, but these illnesses are lifelong, and it can be scary to see people like me get disabled who were previously very healthy. We represent the fallibility and randomness of the body.

Long COVID has a few cousins (ME, MS, CFS, etc), and it is experienced differently by everyone. 200+ symptoms, 65 million people worldwide, it’s been hard to find a correlation in such a recent illness. Some people recover, others are bedbound, some push through, and everything in between. So that inconsistency makes it hard to understand and, honestly, develop sympathy for people with it. 

What has been the biggest adjustment for you?

Not knowing that I can always rely on my body. The humility that limited energy brings. I walk with a stick now. I use a wheelchair on outings. I can work for 2 hours a week. I cancel plans frequently because I don’t have the energy. I have learned how to give myself grace for all of these – I used to see them as failures, now they are simply how I live, no judgement. 

Learning to accept my vulnerability and ask for (and accept) help. I was so proud of my independence, and this has shown me how much I need my support network – and that it was there all along. There has been some profound heartbreak of some people not staying with me on this journey, and the overwhelming love and understanding I have received from my family and friends who have stuck by me has helped me adjust to this new way of living (and loving). I am very aware that not everyone has this – even just being believed is a really big thing for people with ‘invisible’ illnesses – and so I try to share the love where I can. 

Giving myself the grace to rest, the kindness and patience I speak to myself with now are very different. Like many others, I would assign my value to how much I could do/produce/achieve in each day, that ‘stress meant that I cared enough’, that burnout meant I had worked ‘hard enough’.

I’ve been reading a lot about activist history, and that Audre Lorde line is a foundational tenet now: “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.” Do not underestimate just how political it is to claim ownership over your own body, especially a female one, or a queer one, a trans one, or a disabled on, or a Black or Brown one – capitalism forces us to ignore our bodies, and when we rest we are protesting that. We put ourselves first, we deserve it, my one wild and precious life will not be focused entirely on punishing myself, my self, or my body, for your standards.

You are so open on social media about what your life is like with LC. Have you found community online, or how has it been to be so open?

I am very careful about what I choose to share and what I’m ready to talk about, and that will continue to change. I am lucky enough to be working with a great therapist, and through our conversations, I’m learning how to give language to what I’m going through, which I pass on to others in case it’s helpful. I’m also careful about not using social media to heal a wound – that is my job, not the function of likes, or seeking validation in the comments. Maddy Alexander-Grout says, ‘show the scar, not the wound’, so as I heal, I feel more ready to share. My background is in comedy, so it’s been really fun tapping into that and making sketches again (I speak to myself as ‘Ego’ and ‘Grace’ about different aspects of long covid, and they are surprisingly filthy and self-righteous, I really enjoy that). I think my honesty about how hard living with long covid is helps people feel seen, and my practical tips on how to ‘still’ do things help people feel empowered to do things, carefully. 

The community have been amazing, I’ve been so lucky in who continues to show up, and it feels like a very kind and powerful corner of the internet. They’re all on the sofa as well, and just as funny and creative and brave and mouthy and kind, but their frustration is how to ‘still’ be everything that they are, even with long covid. I’m trying to show them that this is still possible. For example, I am still a big rock music fan, but I can’t get out to gigs as much, so I’m on the sofa in leather trousers. 

What quick wins could people put in place to make things (could be workplace or social spaces) more accessible for people with LC?

The quick wins can be “imagine attending this event when you’ve not slept for 3 days, and you have a hangover, and you’ve broken your leg so you’re on crutches”. This will put you in the mind of someone’s exhaustion, nerves about events and their physical mobility:

  • Images/videos of the venue so they can imagine themselves there
  • Free companion ticket
  • Physically accessible space. If it isn’t, then acknowledge this, and ask what access needs might help (e.g. “our front door isn’t accessible for wheelchairs, but we can ensure you a seat in a prime location for the event” or something.)
  • Ask what time of day their energy is best suited to the meeting/conversation
  • Recognise that they will be resting before and after the event, sometimes for days, so if you need a follow-up, be prepared for that.

You can find Amy on her Instagram page at LongCovidRockstar

Jan 06

Six tips for making your shelter or refuge accessible

By Undressing Disability

Data released by Sky News from Women’s Aid shows that “less than 1% of refuge spaces for women fleeing abuse are suitable for wheelchair users.”

You can read the story by visiting the Sky News page 

It can be really difficult to know where to start when it comes to making your shelter more accessible. There are lots of larger changes such as installing ramps or accessible toilets that can take time, planning, funding and builders.

However, there are lots of small changes you can make that will help to make things more inclusive.

Here are 6 changes you can make:

1 – Repeat repeat rephrase

Someone who is coming to a shelter may be in a state of panic or feeling incredibly anxious. When we are anxious, it can be hard to breathe and communicate especially if someone also has a communication impairment. It’s not rude to ask someone to repeat themselves if you are not sure what they are saying. Ask them twice to repeat themselves before you ask them to rephrase what they are asking you. It could be that when they rephrase what they are trying to say, you catch enough of the sentence to understand what they are saying.

Be patient and allow them more time but keep your body language relaxed. If you relax, they will also start to feel less anxious.

2 – Learn how to guide a visually impaired person

It can be really scary leaving someone who is being violent or manipulative, especially if you are relying on that person for assistance. Making sure shelter staff are trained in how to guide someone safely and properly is vital. Booking disability awareness training can help but there are some quick steps to remember:

1 – Introduce yourself and say you work/volunteer for the shelter and tell them what is going to happen. Don’t just lead them somewhere but ask if they need assistance.
2 – Offer a shoulder or an elbow: Ask if it is okay for you to take their hand and place it on your elbow or shoulder. If someone is struggling with body contact or touch, it’s important to get their consent first before taking their hand.
3 – Guide goes first: You need to be the person in front so that they are following your direction.
4 – Move items and people: Move as many obstacles out of the way as possible. It’s good practice going forward to make sure that things like A signage (wet floor signs etc) are not in the middle of the room or that there are no objects for someone to fall over.
5 – Let someone know you are leaving: If you get that person to their seat or the room they need then let them know you are going to go. Otherwise, they may not know where you are.

Want to learn more about guiding? Why not consider booking disability awareness training by visiting our website

3 – Guide Dogs

Not all visually impaired people will have guide dogs but some do. You may also find that some neurodivergent people have support dogs. There are some simple things you can do to accommodate a person’s guide or assistance animal.
1 – Provide a bed for them to rest
2 – Allocate an outdoor space for the animal to go to the toilet and a place to dispose of waste
3 – Remember that people may not like their animals being touched or fed by anyone else. It’s important for staff to remember this.
4 – Provide a water dish if possible or access to clean water.

4 – Consider your forms and information

For some neurodivergent people, forms or large blocks of text can be really tough. Can you consider alternatives for people?
There are lots of different alternatives to written forms or information that you could consider.
Is it possible to create a video which describes the support service or an audio description that can be played? Could you use large print versions of any information or forms that can be downloaded from your website? If someone is available to help, could you assign a volunteer to help a person fill in any forms they are finding difficult?

5 – Ask don’t assume

Ask don’t assume. It’s best to ask someone what their access needs may be. Not every disabled person will have the same access needs. It’s important to listen to what someone tells you about their access requirements. If someone tells you they don’t need assistance or any changes then this should be respected.

Also, if someone tells you that any changes you have implemented are not working, be understanding and initiate a conversation on what to do next.

Check-in after time has passed to make sure that a person’s access needs haven’t changed.

6 – Being aware of your contact details:

With 1 in 6 of the UK population experiencing hearing loss and D/deaf women being twice as likely to experience domestic abuse, refuges must be accessible for people who are D/deaf.
Consider how D/deaf and hard-of-hearing people can contact your support service.

There are lots of options, including:
1- Providing a mobile number so people can text you
2- Providing a monitored email address
3- Ensuring staff are aware of the Relay UK service – a free service which allows deaf or hard of hearing people to communicate with you via an operator who types what is said for the deaf person and speaks, if needed, what they type. All they need is a free downloadable app and access to the internet.

We also offer free downloadable resources that can help you to learn more.

We would suggest our resource on making shelters accessible for Deaf people and our other resource on accessible retail spaces. This includes practical advice on making buildings accessible that could be adapted for wheelchair users.

Download our resources by visiting our dedicated page

Jan 28

Accessing A Smear Test As a Disabled Woman

By Disability, Sex & disability, Undressing Disability

There’s no doubt you’ve heard all the statements out there about smear tests, encouraging those of us who are busy, scared or just downright lazy to crack on and book an appointment. ‘It literally takes two minutes, it doesn’t hurt, and it’s FAR more important than it is embarrassing’. All absolutely true, for the most part, but is it the same experience for a disabled woman?

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