Q&A With My Partner: What It's Like Being My Carer

When do you think your role as my carer really began?

I think it was around the time I noticed you were struggling with pain and mobility a few years ago as it was becoming clear that you needed a hand with certain things, even if these were small things that I could do that would make a big difference to you. 

How do you feel like you manage your workload working a full-time job and looking after me too?

I think generally I have got quite good at doing both of them successfully. I'm able to work effectively in my job and help and care for you around this and when I'm home. For the times when I'm in work, I will plan ahead to anticipate what you might need during the day to prepare this for you, such as making sure your meds are available and anything you need is easily accessible for you. 

What does looking after me involve from your perspective?

Sometimes it's hard to separate what would come under 'carer' activities and what is just the things anyone would do for their partner. Some of the things are small things like I've already mentioned such as making sure your meds/food/drinks are prepared, along with ensuring you remember to take your meds at the correct times. I also need to give you a hand or be available when you get a shower/bath due to the risk of you fainting being a lot higher. The other main activity I would say comes under a carer is helping you get around when we go out somewhere, whether this is supporting you when needed if you are walking or pushing you if you need to go in your wheelchair.

Is there anything you've learned from being a carer?

Being a carer will be different for each person doing it and the person that they are caring for and some of the things that you help them with are often not a huge task. Many of the things are a straightforward and easy task for someone such as myself who is not disabled, but they can make a huge difference for those receiving your care. These small things that you do can have a real impact on the persons quality of life and help ensure they are able to do things that they would not necessarily have been able to otherwise.

Has it changed our relationship since you've been my carer as well as my partner?

I think because were have always been very close and enjoyed spending time with each other, along with always being very good friends from the get-go, I don't feel like things have changed drastically. As your conditions have developed over time it has been more a case of adapting as we go rather than things changing overnight. We are still able to do the things we enjoy, some of these have just been adapted. I would say that we have become a lot stronger over the years as a result of me being your carer and you going through a lot.

Do you wish you were able to pay for someone else to come in and be my carer?

In one way it would be great if you were able to have more care if you needed it and able to be taken out if you needed to. But on the other hand, we seem to have a good way of managing it and organising things at the moment but obviously, things may change in the future when there may be more of a need to have someone else come in and help you.

What are the negatives of being a carer?

I think sometimes people see me as your carer first rather than your partner and just immediately think that I must only be your carer and that's it. I have noticed that you sometimes see people judging the situation without knowing anything about it. 

Do you think carers are acknowledged enough by the government?

I think it's hard that a lot of carers are not recognised and given any financial support by the government that would make helping and caring some someone a bit easier and could help to provide things that would improve the quality of life for the person they are caring for, such as certain adaptions.

Do you regret not having a more private relationship between us, since there is absolutely no privacy between us now?

As we've always been open with each other about everything I don't feel like it has changed that much and it really doesn't bother me. I know that I help you with certain things now and know a lot of information about your medical conditions, but I'd rather have it this way as it means I can support you more effectively. I'd also there be less privacy and be able to help you with anything you might need rather than keep certain things private and then you have to struggle on your own. 

What is frustrating for you being a carer?

It's annoying how difficult it can sometimes be for me to get carer access to places when we visit. We've had to purchase a few different cards to 'prove' that you are disabled and that I'm a carer in order to allow me to get into a venue as your carer. Some venues, such as concert venues, don't make it easy if you need accessible tickets. I remember when trying to get tickets for a concert, I just had to ring up the general booking line even though there were only specific seating that we were able to get tickets for. Other venues have their own dedicated accessible booking lines which are much better so I know it can work - I just feel not all venues are considerate enough for those who have additional needs.

From experiences pre-covid, when going on days out, what have you witnessed that has shocked you?

One of the things I have noticed is the number of people that stare at your when you need to use a mobility aid, especially when you are in your wheelchair. I understand that younger children may stare as they are not used to seeing people in wheelchairs so they may just be curious, however, for anyone else, there is no excuse to stare. I understand you may glance over but people I have seen look at your for a considerable amount of time.

What is it like having to speak for me sometimes?

I don't mind ever having to talk for you as I know it can be difficult for you sometimes. I've seen it a number of times when you have been trying to explain something for yourself and people don't take you seriously and I'm more than happy to speak up and advocate for you to reinforce what you are saying, such as needing considerations for something we are doing.

Do you feel like you've become a disability advocate yourself?

Definitely. I have noticed that I became much more aware of things and feel I will take more things into account realising how it could affect disabled people. I think that my mindset has changed and I will always try and look at things considering how they could impact disabled people. This could include access to places, adaptions needed or even whether the red emergency cord in a disabled toilet it correctly all the way to the floor.

What is one thing you wish people would know about disabilities and chronic illnesses?

Each person's experience and situation with having a disability or chronic illness is different and their needs will vary. Just because one person with the same or similar condition(s) is able to do something does not mean that someone else will be able to so you should never assume anything about someone who is disabled or chronically ill.

Have you ever witnessed medical gaslighting with me in my appointments?

Unfortunately yes, and on more than one occasion. When you weren't able to see your regular GP, you had one appointment where the other GP downplayed the symptoms you were explaining to them. They even turned to me and started responding to me even though you were the one who was speaking with them. I know for some of your conditions that you experienced gaslighting on more than one occasion and it took multiple appointments for you to be taken seriously, which meant you weren't able to access the help you needed to control things such as your pain you were experiencing. 

What are some misconceptions about caring for a partner that you'd like to address?

One of the things about caring for a partner isn't about doing things for them all day every day. Sometimes, just helping them with simple things can be really helpful for them, such as taking their medication or helping them get to the loo if they are physically struggling one day. Something else is that it's not a burden to help care for you. Everyone needs help sometimes, so helping someone you love and care for should not be seen as a negative thing.

Are there any misconceptions that you yourself have learned about that you once thought were true?

I didn't previously realise the realities of ambulatory wheelchair users. I knew that just because someone used a wheelchair, this didn't mean that they couldn't walk at all, however, I'm now much more aware of the reasons people use a wheelchair and this can vary day to day and even within the same day. People may be able to walk for so long and reach a point where they then need to use a wheelchair. I also thought that accessing support for help and financial support was much easier than it is, and now realise that getting access to things such as a blue badge, never mind financial support is a lot harder than it should be. 

What advice would you give people in the same situation as us, with one partner caring part/full-time for the other partner?

Obviously, things will be different for every couple depending on your own situation, but there are some things I think would be applicable to a lot of people. Taking the time to plan ahead and prepare can really help. This could be for if you are going away on holiday, or even for the next day when you will be out at work. Things such as the Sociability app are useful to download as they collate a whole host of accessibility information in one place. I'd also reassure you that it's worth sticking to your guns when it comes to things and don't be afraid to speak up for your partner. Be firm but kind and don't let anyone gaslight or downplay your partners needs as you and your partner know best. 

What are your hopes for the future regarding my care and our situation?

I'd prefer to be able to work from home in the future in whatever work I'm doing as it would make it easier to help out when I was on a break from work or on the off chance you took a turn for the worst I'd be able to help straight away. I know it's something we are currently working towards, but I hope we are able to get a blue badge to make it more accessible and safer when parking. It would be a help if you were able to get some financial support, even a small amount to help cover the additional costs you experience such as medications and access aids. I know we have also talked about our house situation in the future, and I think if we could either move or extend our house at some point to make it easier for you to get around if we could have a more open-plan space. I know we don't have the funds to do this any time soon but I hope in the future we'd be able to.

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Myths and Assumptions That Non-Disabled People Make About Disabilities

A disability in the UK is defined by the Equality Act 2010 as a physical or mental impairment that has a substantial and long-lasting effect on a person's regular carrying out of day-to-day activities. This means disabilities can include visible disabilities but also invisible ones such as Autism, chronic illnesses like Fibromyalgia, mental health conditions, and vision impairments. Some disabled people will have multiple disabilities both visible and invisible. There is a lot of stigma that comes with having a disability, such as stereotypes applied to us, people feeling like they cannot communicate with us, being left out and so much more. We are often discriminated against, whether that being in the form of ableist language and insults, businesses not providing access, not being believed in medical settings, and being left out of things like marketing campaigns. Misconceptions and myths need debunking, so I thought I'd write this post with a lot of them. If there is more to talk about I'll write a future post too.

Not that many people are disabled anyway so why listen to articles like this oneOne in five people in the UK have a disability or chronic illness. One in five. 20%. Scope breaks this down into a few categories, including 8% of children are disabled, 19% of working adults are disabled and 46% of pension age adults have a disability.

Person-first language is more polite and every disabled person prefers itFrom the disabled people I've had the pleasure to meet online, and my own personal preference, the consensus is that identity-first language is better. I am not a person with a disability, I am a disabled person. From what I've seen online, identity-first language is more common in the UK, with person-first language used more in the US. However, if you go on Twitter and speak to disabled people, a huge chunk of them will tell you they prefer identity-first language. I think sometimes it depends on the disability or chronic illness too. The preference depends on the setting, as workplaces and businesses may often use person-first language as they see it as more polite. Another example of language choice is not referring to people as 'suffering from X' or 'bound to X'.

It doesn't cost disabled people more to liveIt actually does, by a lot. Scope in 2019 found that it costs on average an extra £583 a month to have a disability. This includes things like paying for mobility aids, parking for hospital appointments, paying for physiotherapy, items in the house that make it more accessible for you. 20% of disabled people face costs of over £1000 a month. Considering a lot of disabled people have no welfare money coming in such as Universal Credit or Personal Independence Payments, this is a lot of money to conjure up. In my case, I have no welfare money and rely on my partner working in his full-time job. He gets no money for being my carer when he isn't at work. We have to miss out on so many things that others take for granted, such as going on holiday, eating out at restaurants, buying a new car (that would fit my wheelchair and aids in a lot better!), buying a bigger house, buying designer clothes and so much more. Even a good sofa is a no-go for us. We have an IKEA sofa which has already had to be replaced on warranty, we cannot afford to get a fancy sofa even from places like DFS. The pressure of trying to pay for bills and mobility aids is another reason why disabled people struggle to get into the workforce too.

It's okay to offer us solutions/curesI don't think under any circumstances it's okay for someone to try to 'fix' a disabled person. I think there can be things that can genuinely help symptoms for people, but on the whole, it's better to ask a person first. This could be as simple as 'is it okay for me to offer a suggestion that has helped me before?'. From experience, a lot of these cures/solutions/suggestions seem to be offered in a more passive-aggressive tone without genuine concern for the disabled person. Things that have been suggested to me before comprise of: trying yoga, trying pilates, walking, swimming, trying detox teas, getting a professional massage often (like I'm made of money), eating kale, sleeping better (like I haven't tried), essential oils, meditating and mindfulness, trying not to think about pain, drinking smoothies, resting and more. And people wonder why the cost of living is higher for disabled people if they're paying for a lot of these things and mobility aids and prescriptions. Needing to 'fix' us implies that you think we're broken. Everyday Feminism explains it perfectly; 'cure-focused narratives have deep roots in systemic ableism'. Treatments for us is a different matter, which can be things like physiotherapy, hydrotherapy, medications, surgeries and mobility aids. Emily Ladau puts it perfectly 'Those who are fighting hard to eliminate genetic disability should be fighting harder to change the world".

It's okay to park in a disabled bay if you don't have a blue badge, even if for a few minutesI can give a very quick answer to this and that is a huge no. Proportionately there are way more other parking spaces than there are disabled bays, so just use one of those. I don't even have a blue badge yet and this upsets me. It is rude and shows you don't care about disabled people.

Non-disabled people can't do anything to help disabled peopleNon-disabled can help us remove barriers that we face in a mostly-abled world. This can be through advocating for us for things like accessible tickets for concerts, pointing out ableism in public, supporting us to make changes online through things like petitions. By not using our aids like parking spaces and disabled toilets if you aren't disabled/chronically ill. Speaking out against ableist language from people, even if they're justifying it as a 'joke'. Even just opening a door and holding it for us. There are so many things you can do to help us that make take the smallest amount of time but could change a lot for us.

Wheelchairs are for paralysed people onlyIn the UK, out of the 1.2 million wheelchair users, approximately 33% of them are ambulatory wheelchair users and 8% of disabled people use a wheelchair at all. Wheelchairs offer independence to those who struggle to walk, struggle to stand up, are in pain when not using them or just do not have the energy to not be in a wheelchair. A lot of people get comments like 'someone else could be using that wheelchair and you're taking it away from them' which is ridiculous as some people like me own their own wheelchair (mine was donated to me). I think from my point of view, the funniest thing from me using my wheelchair was when I wiggled my legs and a lady looked at me in horror, like she assumed I was paralysed. Another comment is about being too young to be in a wheelchair. How do those people explain disabled children needing wheelchairs or elderly people who are fit and well who doesn't need them? There isn't an age limit on disabilities. I have Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome which means my joints can dislocate and I can faint from standing. In what world do people think it's safe for me to be walking around a shop or a park if I don't feel able to? It puts me at risk of injury.

We all have really strong painkillers like opiates to manage painYou may actually be surprised to hear that even the strongest painkillers sometimes do not take all of the pain away. Some people are not on any painkillers as everything they've tried doesn't work. Even if people are on strong painkillers, so what? A lot of chronic illness and disabled people struggle even getting some form of pain management as they're wrongly mislabelled as 'drug seekers'. Medication is a personal and complex topic and probably shouldn't be asked about unless you are that person's GP.

Disabled people can't/shouldn't have childrenThis is a classic example of Eugenics. This is defined as 'practices that aim to improve the genetic quality of the human population' and was used by the Nazis in the 1930's and 1940's for example. In that time, there was forced sterilisation of disabled people in order to make 'the best humans in the future'. It has been used to try to justify human rights abuses and despite it being widely known as a horrific thing, so many people still think disabled people should not be allowed to have children. I think people forget that you can become disabled at any point in your life, whether that be from developing a post-viral illness or being in an accident. The most important thing I can think of is 'why are other people concerned about whether we have children?'. Why does it matter to them? Whether disabled people can't have children is their personal circumstances and their medical information should not be shared with us unless the person wants to. Nobody should be concerned about whether disabled people reproduce unless you are that person.

It's obvious when someone has a disabilitySo many people have what we call invisible disabilities which are conditions that aren't apparent to the naked eye. Say for example you see a broken leg, you know that person has a temporary physical disability. If someone has joint pain, you often cannot see it, therefore it's 'invisible'. This is also apparent for mental health conditions and for Neurodiversity too.

Wheelchairs are the only mobility aid neededNope. Here are some examples of mobility/accessibility aids: wheelchair, crutches, walking stick, orthotics, walker/rollator, modified eating utensils, modified writing utensils, grabbers, grab rails, doorknob adaptors, modified sleeping surfaces, tetrapods/tripods, hearing aids, visual aids, braille menus, assistive computer technology, compression stockings, artificial limbs, feeding tubes, catheters, adaptive kitchen technology like kettles and tin openers, shower stools, hoists, toilet frames, bed levers, assistance dogs, electric mobility scooters, lifts, char lifts, eye-tracking systems, plastic straws, reminder systems, bed/chair tables, clothing aids, canes, keyboards, splints, braces and supports, ramps, fidget toys, automatic doors, and so much more.
We all have a blue badge The Blue Badge enables disabled passengers and drivers to park as close to their destination as physically possible. It costs up to £10 in England, £20 in Scotland and is free in Wales. They usually last around 3 years and you have to reapply for it before it expires. On the application I would check 'I have a permanent disability or condition that isn't expected to improve for at least 3 years'. This is where some of the problems lie, as some medical professionals have the viewpoint that if you exercise and lose weight you can manage conditions well which is not the case at all. If the medical professional doesn't really know about your conditions at all, it can be difficult to prove otherwise. When applying you can use supporting evidence, which is often a letter from a professional and PIP award. For me, I will have to contact my GP to ask for a letter and plead for them to say I won't 'get better' or improve, and I also I don't have PIP right now. When it comes down to having a Blue Badge, you have access problems gaining it, a financial cost, and the need to prove your disability. It isn't always easy.

We all claim Personal Independence Payments (PIP)Like above, a lot of us don't claim PIP. Sometimes because the access isn't there in the first place to aid in filling out the forms and going to the assessment. Sometimes this is because the mental stress of filling them out and being assessed is way too much. Other times it may be because we don't have enough evidence despite living daily with our disabilities. Since the Government switched from DLA to PIP it has become so hard for disabled people to claim welfare payments. Often people have to go to tribunal to appeal the decision before they're awarded. Think about how much time, effort, mental energy, and sometimes money would go into that. I still haven't applied as I've been waiting for more diagnoses to provide as evidence. It's really tough, and you can be awarded as little as £20-something per week to live on, which is almost nothing.

It's okay to pray for usWithout permission from the disabled person, I don't think it's ever okay to pray for us. For me, it's a hard no. I don't belong to a religion and identify as a Humanist which means that I think about ethical decision-making and science. Before this, I didn't ever personally identify as belonging to a religion when I have been able to think for myself. Aside from this, are you praying that your God will fix us? Because the whole religion and disability topic is complex in itself. The Mighty have spoken about this before, as even strangers sometimes approach disabled people to pray for them. Are they trying to pray it away? People may refuse and the religious person will still try and pray for them. Or, they may refuse, they go back home and they pray for them there. Consent in every context should be taken seriously. The only people who have ever offered to pray for me have been Christians/Catholics so I can only really offer that side of the story but it feels 'off' to me. You don't see us as people, you see us as broken beings who need a miracle to make us into a proper person.

You can be too young to have disabilitiesYou can be born with disabilities, or become disabled as a child, teenager, or young adult, just like you could as an adult or elderly person. This myth is really harmful, as it encourages people not to believe what disabled people are saying if they're of a certain age or they look younger. The thing that gets me most is when older people believe this myth. There are mostly two categories of people who stare at me when I'm in my wheelchair; kids who are just curious, confused, or otherwise, and elderly people. The people who have glared at me most are the latter and I think it's because there is this false assumption that if you're not over a certain age you should be up and exercising, not wheeling around or using mobility aids. In the education system and in the media there should be way more education around disabilities to prevent these assumptions from happening. I've been teaching my 9-year-old sister about disabilities and ableism and from what she's said, she is more respectful and eager to help disabled people now that she is free from certain assumptions.

Disabled people can't be independentThis comes across to me as an uneducated and rude assumption, to be honest. Why can't they be independent? Why does it matter to you if we aren't independent? There are plenty of independent disabled people and plenty who need care. I'm not sure why this matters. Sometimes when out people will talk to the person who is with the disabled person, as if we can't talk for ourselves. This is awful and patronising. We are our own our person and should be treated the same as everyone else.

Disabled people should all be trying out for the ParalympicsI don't understand where this comes from. A lot of people have one of two mentalities; the first that we are all 'mega' disabled and have carers and loads of welfare money and we cannot do anything for ourselves, or, that we could be amazing Paralympic athletes and we just need to put our minds to it. What? So many people with disabilities live in unbearable pain, or they require access aids to help them do daily tasks. Let's maybe not encourage people to be athletes unless they express interest in it.

We all have carers or family that look after usAbsolutely not. Some people have neither, some people have one or both. I am lucky that my partner is my carer, but that is only because he cares for me outside of work. During his working hours, I am left alone and it is often difficult for me. Should my condition get worse we will have to look for a carer but we cannot afford one. Care in the UK is underfunded, unsupportive, and frankly not good enough. The Government does not care about disabilities (source: see their voting history). I think with the family route, some people are single and they are estranged from their families, or their close members have passed away. I would be super wary of asking people what their care situation was like unless you were able to offer a viable solution for them.

We refuse to get a job and use disabilities as an excuse4.4 million disabled people are in work, which out of 14.1 million disabled people is a good chunk of people, especially considering you have children, retirement-age people and people with severe disabilities that prevent them from working are in this number. Many people do work with their disabilities as the statistics above show, but there are many barriers that disabled people face. Scope outlined that if 1 million more disabled people were in the workplace and supported there too, the economy would fact a boost of £45 million. A lot of disabled people want a job, but can't access jobs, or a discriminated against in job interviews. Fun fact, you don't have to disclose your disability to anyone. But facing support is a difficulty. Ways in which the workplace can support disabled people may be allowing remote work, providing lifts and disabled toilets, providing disabled parking bays, modifying hours, software licenses, and much more. Many employers think providing access is too hard, or they're worried they'll get it wrong. According to Huffington Post, the reasonable adjustment could cost just £30. The UK Government's Access to Work can even help employers cover these costs. For some, it's not the job itself but the transport. For me, with reasonable adjustments, I could work an office job providing I had plenty of smaller breaks and other things, but I cannot get to a job. I don't have a car and will not be able to drive now (see my POTS post here) so I would have to rely on public transport. Taxis can be an issue with bringing mobility aids, buses only have one disabled bay and often prove difficult when standing for a bus. Trains are tricky as often if you're using a wheelchair you have to book access help over 24 hours in advance which is ludicrous and sometimes the people don't even turn up to help you onto the train. Often on trains, those disabled bays are filled with bicycles and suitcases too. I can't cycle due to the pain it puts me in, I learned the hard way when I went to Center Parcs. Obviously, if I'm not allowed a driving license I can't use a motorcycle, not that I could afford it anyway. Walking a long distance (we're talking over 5 minutes) is a no-go. So where do we stand? For me, freelance work and working on this blog is the only option I have left.

Businesses don't need to provide access to disabled people1 in 5 people have a disability, that's 20% of your potential customer base alienated if you refuse to provide access. According to The Ramp People, if access was provided it could bring in £249 billion a year. The Equality Act 2010 should be reformed to make more businesses provide accessibility but right now it's down to the business themselves. Access can be in these forms: Alternative menus including large font, different coloured paper, and braille, ramps up to doors, automatic button doors, disabled toilets, changing spaces toilets, no flashing lights or strobe lighting, a quiet room for sensory purposes, moveable chairs to allow wheelchairs to take their space, access listed on your website/Google Maps, lifts, wider stairs, handrails, multiple disabled parking bays, employees trained in basic British Sign Language, space wide enough for wheelchairs to manoeuvre, no chairs/tables/signs blocking the pavement outside, dropped curbs, adequate signs, low background music, and accessible checkout desks and reception areas. According to Purple, businesses miss out on £2bn every month if disabled people cannot access their services or shop. 

Whatever the medical professional has said is always right and we can't know more about our conditionsIf you've not seen the meme 'Don't confuse your Google search with my 6-year degree and medical school' then you may not have seen the response from the disability/chronic illness community. The response is 'Don't confuse the one-hour lecture you had on my condition with my X years of living with it'. It's true though. I have had to explain my hEDS condition to almost every medical professional I've had. The only person who knew about it was my Cardiologist. Even with POTS, I just said 'dysautonomia' to my Neurologist because so many people have no idea about these conditions. Obviously, there are exceptions here; there are specialists in those conditions, some professionals have the conditions themselves or some are keen on learning more about conditions and will know a lot about them. Sometimes you will have medical professionals who don't know about your condition but will read up on it and learn more before your next appointment. But the whole 'don't Google anything' mentality is damaging and dangerous. How many people will have symptoms, search about them and realise it's more urgent than they thought and seek medical treatment that can save their lives? My bet is more than you may think. I have Googled the whole way through seeking multiple diagnoses because I had no idea what I might have been facing. I had joint pain and the only thing I knew of was Arthritis, which from tests I do not have because I don't have inflammation of the joints. I knew from my first misdiagnosis that it wasn't as simple as 'you're bendy', Googled it, researched it and went back with more knowledge, and advocated for better care, and it completely paid off.

You don't really become disabled later on in lifeOften we are asked "were you born like that" which 1. you shouldn't be asking that, if you're intrigued about someone's disability there are far better ways to start a conversation, and 2. why can't you ask 'do you need any help' or 'how are you getting on', not questioning our disability. This is a multi-part question regardless. A lot of elderly people become less mobile and would class themselves as disabled. There are plenty of instances of people either being born with their disability or becoming disabled at any point in their lives. Genes can kick in with things like puberty or menopause, accidents happen, you can be born with a genetic condition that gets worse as you get older, things like viruses can leave you with disabilities. Also, mental health conditions and Neurodivergent conditions like Autism, ADHD, etc are all classed as disabilities if it affects your daily life. You may not know you have one of these until you seek medical help. Anyone can become disabled.

We're brave for living with our disabilitiesThis one is right in the 'inspiration porn' area. The reason disabled people don't like it when they say they're 'inspired' by us is because it's often used when we're just doing our daily tasks. Non-disabled's expectations for us are nearly touching the floor they're that low, so if we do anything independently it's often mentioned about us being brave. Stella Young said in 2012 "what did they inspire me to do?" and I think that's a great quote. If we put our shoes on ourselves, are you now inspired to put yours on yourself? No? Exactly. It's so patronising.

It's fine to use wheelchair-boundThis ableist language is not okay for a few reasons. The first is that for those who need a wheelchair, it's an extension of the legs themselves. Non-disabled or abled people can get around using their legs, so for us our wheelchair is the equivalent. That's why it isn't okay to push us without asking or to store your bags on our wheelchair without asking permission. Also, why are we 'bound' to one? Many wheelchair users are ambulatory wheelchair users anyway but many people who are not will transfer to a sofa, a bed, a chair. They do not stay in their wheelchair 24 hours a day.

Disabled toilets are for wheelchair users onlyThis is a common misconception. Some disabled toilets have now changed their imagery to include things like walking sticks and invisible disabilities. If you are genuinely disabled, that toilet is for you. If you're using it to skip a queue or otherwise, that is not for you. But on the topic of wheelchairs, a good percentage of wheelchair users are ambulatory, meaning they can either walk, stand, or take a few steps.

Once you become disabled you are disabled foreverFalse, conditions like cancer and other life-threatening conditions can be covered within the Equality Act 2010 from diagnosis until you're recovered. You may have a condition that when treated or medicated well, you don't consider yourself disabled anymore. Some conditions are untreatable or incurable, however.

We should use nicer language, like 'differently-abled' instead

As #EDI member at my workplace,
we adopted the #Socialmodelofdisability. It proposes that what makes someone #disabled is not their medical condition, but the attitudes & structures of society.
It's been suggested instead use "different ability"
Which do you prefer?
Please RT

— ⚰ Kaylo ⚰ (she/her) (@Marmitelover88) March 5, 2021

I saw an article on Medium about why we shouldn't be scared of the word disabled and substitutes just should not be used and I completely agree. Creating other labels is an attempt by some to make it 'nicer' for us but it actually does the opposite. Other labels include 'special', 'challenged', 'handicapable', If someone were to call me by one of these disability euphemisms, I would ask them what my other abilities are, or am I special like a magical being? Because these words are just terms for 'different' or 'not normal'. Disabled is the appropriate word to use. The euphemisms are infantilising and if they're used with children it will be frustrating for them to have to switch labels when they turn into a teen/adult. Disability rights activist Lawrence Carter-Long created the hashtag #SayTheWord to advocate for everyone using the word disabled instead of euphemisms. When it comes to using language around disabilities, the National Center on Disability and Journalism has a create dictionary online that you can use to see what is appropriate, although it does advocate for person-first language completely so take it with a grain of salt. The NHS has a language guide here too.

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Being Diagnosed with Postural Orthostatic Tachycardia Syndrome

I thought this day may have never come, but I finally have my POTS diagnosis. I'll explain a bit about what POTS is first, then I'll chat about how I got my diagnosis and the time frame too. 

Postural Orthostatic Tachycardia Syndrome (POTS) is an 'abnormal response by the autonomic nervous system to upright posture'. It means when someone with POTS stands up, different symptoms can occur but this will usually be dizziness (pre-syncope), syncope (fainting), fatigue, nausea, brain fog, temperature dysregulation, palpitations and headaches. Other symptoms can include cognitive impairment, excessively rapid gastric emptying, chronic headaches, tremulousness, sleep abnormalities, orthostatic intolerance, anxiety, visual problems, chest pain, blood pooling resulting in purplish discolouration and bladder problems. There are a number of causes of POTS, but I have what's known as secondary POTS because I have it as a comorbidity to my Ehlers-Danlos Syndrome (EDS), specifically the Hypermobility type.

Things that can worsen POTS are things like excess heat, standing up quickly, dehydration, menstrual periods, the time of day (worse in the mornings), alcohol, eating, and more. There are different ways for POTS to be diagnosed and this will depend on which country you live in and the preferred method of the medical professional. For me, I started off with a GP appointment in December 2019, and my lovely GP referred me to the Cardiology unit in the local hospital. Around January/February 2020 I had an appointment in Cardiology for me to go over my symptoms and I briefly mentioned my EDS and the Cardiologist there said it's common with POTS. I had a series of tests there before I had other appointments such as 24-hour ECG, 12-lead ECG, blood tests, and an Echocardiogram (ultrasound of the heart). 2 years prior I had already had 2 ECG's and one 24-hour blood pressure monitoring. In September 2020 I had a phone consultation with a different Cardiologist, and he said he would chase up on my Tilt-Table Test. This is where you lay flat on a bed that has a footplate (so you lie from the bottom up with your feet at the very end of the bed which felt weird for someone who is 5ft 4") and you are monitored constantly via blood pressure and heart rate. The two female medical staff were lovely but told me they couldn't have conversations with me once the test had begun as it can be distracted and can affect your results. They tilted the bed up (head up) 60-90 degrees (source: BHF) and they dimmed the lights. You stay like this for 20-45 minutes. For me, the test was cut short at maybe 10 minutes as I blacked out and lost consciousness (which is what they're looking for really). If you don't faint, they can give you a glyceryl trinitrate spray to see if it accelerates your symptoms to observe whether you will get dizzy or faint. I was so worried that they wouldn't have the results they needed that I was willing to start it again! I've attached my Instagram post below from my chronic illness account that I wrote directly after it.

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A post shared by Lau 👩🏼‍🦽🦓✨ (@chronically.lau)

Although POTS was first recognised in medical journals in 1993, a lot of medical professionals still have no clue what it is. It's really hard to prove you can faint unless you do faint, so having a written diagnosis is completely worth it. I felt like it took a lot of advocating on my part and being vocal with what treatment I'd like. Basically, from the September 2020 appointment, I was prescribed Bisoprolol which is Beta Blocker that slows down your heart rate and makes it easier for the blood to get around your body. Since getting my diagnosis, my Bisoprolol has doubled so I take one in the morning and one in the evening. Since December 2019 I've also been taking Ramipril which lowers your blood pressure and helps the blood get around the body. They both seem to work well for me and I'm very grateful that they have both reduced my palpitations and chilled my heart out a bit. I have also been 'prescribed' a high salt diet of 10g a day. The NHS recommends for most of the population the intake of salt is no more than 6g a day. The only other things to help are: making sure you don't stand up too quick, wear compression clothing to stop blood pooling, when standing crossing your legs and standing in different positions, drink plenty of fluids, avoiding long periods of standing, and reducing caffeine intake. Exercise is suggested, similarly to EDS, but I find this difficult. I get extreme headaches, cannot do fast exercises like HIT, things like using a cross-trainer make me incredibly dizzy, and things like swimming set off my Fibromyalgia. The best things I can do it using a rowing machine which I don't have, nor a gym pass, gentle stretches, and when I'm up to it, going on short walks. 

I'm really glad that I've finally got my POTS diagnosis as it explains so many of my symptoms and has enabled me to get the treatment I need, particularly helping to lessen the heart palpitations and regular spells of dizziness I've been experiencing. If you are also going through the process of getting a POTS diagnosis or are experiencing symptoms that you are not sure about, then my advice would be to keep going, record your symptoms and do some research around POTS so when you speak with your GP you have a better understanding yourself which should help to explain what you are experiencing. If you ever have any questions you'd like to ask about POTS or other health issues then feel free to tweet me.

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What It's Really Like Living With A Disability

Me with my walking stick

I feel like the more and more I seem to open up about having invisible illnesses, the more 'advice' people will try to give me, which often then makes me zip my lips as I feel like there is no point anymore. Unless you live with someone who has a disability, chances are you have no idea what it's really like.

I have Ehlers-Danlos Syndrome (EDS), Fibromyalgia and Postural Orthostatic Tachycardia Syndrome (POTS). I have the Hypermobility type of Ehlers-Danlos Syndrome but I will briefly explain what that means and then explain why the hypermobility and fibromyalgia sync together. EDS is a connective tissue disorder, meaning that my skin, blood vessels, ligaments, tendons, internal organs, bones, etc are affected by it. It's a genetic condition, so you either inherit it from a family member (which we're pretty sure is my Dad since he is showing a lot of signs of having it) or a mutated gene. Currently, the medical world have not discovered the specific gene in the hypermobility type and there are various tests that I've had to go through to be diagnosed. Although EDS has been recognised for decades, there are some people in the medical field that are dismissive of this condition as most symptoms are 'invisible' and especially younger women are believed less which is so frustrating. My Dad was sent to see a geneticist who simply told him that she didn't believe in EDS. 

With having the hypermobility type, my joints subluxate easily. They move around but don't fully dislocate, and since this is often invisible to the eye, a lot of people simply don't believe me when I say it's happened. My other symptoms include joint pain, extreme fatigue, digestive problems, migraines, IBS, nerve pain and other horrible symptoms. In another life I'd be a great gymnast but unfortunately, it brings a lot of negative things into my life. 

Annoyingly, sometimes to rectify problems, for example going to the dentist (I'm not even going into dental problems people with EDS have) you need to have a local anaesthetic. People with EDS seem to metabolise this quicker than the average human, often making us need more of it or a stronger dose. A year or so before I was initially verbally diagnosed, I had a filling and the anaesthetic pretty much didn't work at all and because it was a rushed appointment, I felt the whole thing. It was so painful that I was so close to passing out and could feel myself slipping and couldn't do anything about it. I'm not going to lie, I've never been back to a dentist for fear of things like this happening again.

People assume that if you're in pain that your joints are stiff. Often with me, this is in fact not the case, as I'm really bendy and don't need to stretch the joint out. Most often my pain is due to joints moving, muscles seizing up with Fibromyalgia or nerve pain. I've managed to decrease my nerve pain in certain areas, like in my arms and wrists through using Gabapentin. I feel like this medication has genuinely saved me since the pain was like lightning bolts going through my veins and simply cannot use my arms or hands in such pain. It is completely debilitating. Luckily I don't experience this as much now but I still have nerve pain in various other parts of my body.

With fatigue and insomnia, the number of times I've heard people say to me that I just need to go to bed earlier, to switch my phone off, to simply try harder to go asleep. There are times that I've been exhausted and have still not slept all night and had to power through the entire next day on no sleep to the point of nausea. I can sleep for 12 hours a night when I do sleep and still need to nap the next day. A routine does help and I go to bed and get up with my partner, but some days I can barely stay awake. It's things like this that prevent me having a job outside of my house, as I'd forever be calling in sick to say I'd had no sleep and can't function, or I'm in too much pain to get ready never mind leave the house and do an eight-hour shift. I grind my teeth in my sleep too, and last week my jaw seized almost completely shut, gave me an intense migraine and I couldn't eat solid foods and had to awkwardly whisper the entire evening. How would that possibly work in any job? Sorry boss, I'll have to write on a whiteboard instead of talking, not communicate with anyone else, close my eyes for the rest of the day and get nauseous because I can't eat and only drink water.

I've been told that if I need to sit down all day then an office job will be fine. Aside from the fact that I'm sick to my teeth of being given 'advice' that is basically a demand, an office job is not 'fine'. I can't drive, and public transport is still not great for people with disabilities. Depending on where I'd work, it could take me over an hour to get somewhere in my city due to walking slow, difficulties with using transport and stopping for a sit-down. This is where it's confusing some people. 'If you need to sit down, just get a taxi to work then sit down all day in an office' they say. Most days I need to elevate my legs as I get a lot of pain in them. The muscles hurt and my knees are so dodgy that often they subluxate and I need to wiggle them into place again which hurts so much. I get back pain and often need to lie down flat to alleviate some of it. I get migraines if I look at screens too much or if I'm in a noisy place. I had to leave my future Father-in-laws's wedding early last year because the laughs from the speeches and the lighting gave me a huge migraine.

As a kid I was always the one out of me and my brother to catch illnesses. I'd regularly hurt my ankles from over-pronating but since it seemed so often I didn't bother telling people and would limp around school. I've noticed now, that if my partner picks up a cold or something else from work, I seem to catch it and have it for weeks. Two years ago I got a cough in the first week of September. Two weeks later I flew to Poland and once I landed I needed throat sweets to numb my mouth and throat, otherwise, I'd have a coughing fit and my inhalers were useless. The day after I landed home I felt really ill and a few days later went to the local Walk-In Centre. I was told I had a virus and it should be completely gone within ten weeks. Well, it lasted 12 and it was the most horrendous time of my life. I would choke constantly and need water almost every five minutes. I was throwing up multiple times a day and anything that had crumbs, spice or a thick sauce made this multiply. I felt like a couldn't breathe but my sinuses were clear. I wouldn't wish half the experience on an enemy. It was right at the time that all the family and friends birthdays popped up and I even got engaged in this time as it was on the last part of the illness. We went away for my birthday and I knew Andy had brought the ring (see more on this here) and I said to him listen, I know you were going to propose at my favourite castle, but please don't. I was throwing up constantly on that trip and I knew I wouldn't get to experience how magical it felt. I booked us a trip back to Newcastle where we met purely so he could propose two months later as I knew he'd love to do it up there and although I was still ill, I finally got to have a nice time. Can you even fathom how horrible the entire autumn and part of winter was being so ill, and having the other problems I have too?

My partner pushing me in my wheelchair

Another huge misconception is that you have to be paralysed to be in a wheelchair and therefore you shouldn't use one if you can walk and that also means you can't use disabled toilets. First of all, ambulatory wheelchair users exist. People may use them to prevent fatigue, injuries, flare-ups, and pain. They may also use other mobility aids for these reasons too. The number of times I have used a wheelchair for these reasons and moved my legs and the looks of horror I've received is honestly ridiculous. You know what type of people don't do this? Children. It seems to be the age category from my experience of roughly 40-70 where people look at me rudely. People closer to my age and children really don't seem to care that often. I do get people walking straight past me and their bags hit me in the face. They hold their cigarette close to their leg in between puffs so the smoke goes straight into my lungs and as someone with mild asthma it's not that nice. People have tutted if I'm coming down an aisle and it means they need to move slightly so that I'm able to come through and they can get down the aisle. I've had people only talk to my partner because they wrongly assume I can't communicate. People have seen my engagement ring and looked so confused as to how I could possibly have someone who loves me enough to marry me, then I can see their mind wandering, almost confused as to how I'd get down an aisle and how I'd possibly wear a wedding dress. The only way to fight this seems to be smiling and being polite. I don't have the energy to almost have to prove my disability to people anymore. And currently I don't even have a blue badge so it's dangerous even getting in and out of it, but I bet if I do get one in the future I will no doubt be left with horrible notes on the windscreen telling me I don't look disabled. Going to the toilet is awful too. In Manchester recently there were locked disabled toilets, lifts not working, doors labelled as disabled toilets only for them to have a changing mat with no toilet in. Also, the key thing is that you need to scan to open it or get a member of staff to open the door. No automatic opening, so by yourself it's hard to get in and out of the door. How are disabled people supposed to be more independent if there are multiple obstacles we are supposed to get through just to do things abled people are okay to do like use a toilet?

There is a stigma too about using painkillers. First, I've been told by people with little or no medical experience to just take some paracetamol and ibuprofen and my pain will go away. They don't work on me and despite me saying this I'm often not believed. I'm currently using Tramadol for pain prescribed by my amazing GP, only after trial and error of lower strength pain medication. I have to go to appointments for pain management basically to prove I'm not getting addicted to it. People sometimes don't believe I have pain if you can't see where the pain is. Often I get told that if I exercise my pain will go away. Even though they know all the rest of the symptoms this is what I'm told, and it's frankly not the truth. And because I'm overweight this is the default response and it is infuriating. You know when I turned overweight? When I started to experience all this pain to begin with and my GP seemed to think stress is what caused it after numerous tests. Not because I over-ate. Not because I got lazy.

Stress is what triggered the Fibromyalgia and basically ramped up my EDS symptoms that I had been brushing off all of my teenage life. With Fibro I get widespread pain which consists of burning pain, stabbing pain, aches and more. Most of the time it affects my back, legs, arms, and head. I also have increased sensitivity, so this includes light, heat and sound. It brings fatigue and poor sleeping. It brings cognitive issues known as fibro fog or brain fog, so I forget things easier compared to when I was a teenager and I find it incredibly hard to concentrate. I can't control my body temperature sometimes, so I can go really hot and really cold quickly, or some parts of my body are so hot and others feel freezing. It can make you feel really nauseous and irritated. Periods are a big issue too. You get period pain, which flares up your Fibromyalgia in the hips, legs, and back. Because I also have lower back pain due to EDS, this is amplified and I am in horrific pain. For these reasons, I take multiple contraceptives supplied by said amazing GP to stop me from having periods. 

For these reasons I genuinely believe most abled people simply have no idea what we go through. In my eyes, I don't have it anywhere near as bad as others, and I know not to compare apples and oranges but if all of this happens to me, it must be dreadful for people with fewer abilities than me. How people expect me to live a normal life and have plenty of children and hold down a job is baffling. With EDS I have a 50% chance of passing this on to a child, regardless of the god-awful symptoms and experiences pregnant people with EDS go through. I've discussed why holding down a job is too difficult and that's why I work for myself from home. I'm judged constantly by people for not being able. People don't understand why sometimes I can't attend social events, be out and about for a whole day or even the simplest of things like look after myself. My partner sometimes has to come home from work earlier or use his holidays to help me bathe, feed myself and more. I lost all dignity with my disabilities and I'm glad my partner is so understanding. Without him, I don't know what my life would be like. I wasn't disabled when we began our relationship so he has been through this whole experience with me. I've learned to only see a small group of people now due to prejudice and lack of understanding. I often leave fun activities and family gatherings in a ton of pain. How do you explain this to a perfectly abled person?

The thing is, often for people to understand what it's like, they either have to experience it themselves or be close to someone else going through it. I'd never want anyone else to feel the way I do. There is no cure for EDS, and while Fibromyalgia is also only confirmed by certain tests and not genes, I have a double whammy of conditions that are not understood properly. I might have even more conditions in the future, and heart problems are a particular one I'm worried about as I often have palpitations but they aren't bad enough (along with other symptoms) for me to have POTS (Postural Orthostatic Tachycardia Syndrome). I went through this journey mostly through university at first and had to fight tooth and nail to finish my degree even though I couldn't possibly use it in a career as I'm in too much pain to be a solicitor like I had planned. 

The day someone other than my partner fully understands and accepts my disabilities will be a miracle.

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