As someone with both invisible illness and hidden disability, I know all too well that life can leave us fluctuating between two polar opposites; one end that puts us at the centre of attention (not usually for a good reason) and the other end that makes us feel completely invisible, and somehow, even feel both at the same time.

It is hard not to feel invisible when you have a disability or illness. That invisibility can feel like a loss of confidence and self-worth, a feeling of grief for your previous life, it can feel like isolation from the wider world or perhaps judgement or lack of empathy and understanding from both those closest to you as well as strangers.

In an overburdened healthcare system and a systemic hate towards those who do not fit into the conformist view of a ‘productive’ member of society, perpetuated by a bigoted government, there is an unhealthy number of gaslighting medical practitioners that add fuel to the problem with uneducated and negative generalisations of those with long term illness and disability. I, myself, had experience of this last year with my own GP – who phoned me for seemingly no other reason than to gaslight me, to shame me for being disabled whilst trying to engage proactively in my approach to my illness.

What people see, family, medical or stranger, what they base their judgements on, are snapshots of a much more complex picture. When you are brave enough to venture out into the world, people have very little context of whether you are having a good day or a bad day, they can’t see your pain, your fatigue, the preparation or recovery time that it took to be present in that moment – and let’s face it, most don’t care. How many times have you heard someone say or been told directly ‘you/they don’t look disabled’, ‘why do they need a to use a disability badge, disabled toilet, mobility aid’? or in my own case ‘you’re too young to use a wheelchair/walker/stick’.

The truth is, society doesn’t want to see difference or disability. They want you to stay hidden, to lurk in the shadows, like a sinister character that can be vilified and scapegoated as required. But as soon as we step (or roll) into the light, to try to work, be independent, to live rather than just survive, we are often met with berating and accusations of attention-seeking or faking. This hate rhetoric, despite being very much in the forefront of politics in recent months, it is unfortunately not a new undertone in society and it has been an intrinsic part of my own family history. It was instilled in me from a young age, that if you were sick or unhappy, physically or mentally, you kept quiet and got on with it. If you couldn’t meet that ‘perfect’ expectation, then you would be hidden away, and in my case, sent away – returned to sender like a faulty package.

What does this do to the collective and individualised psyche, for everyone, not just those labelled with diagnosis? We all have physical and mental health that needs nurturing and it is short-sighted and naïve to assume we are invincible and immune from becoming one of the ‘hidden’ at any time. Surely the global pandemic should have taught us something? Illness, whatever that looks like, is a leveller; it doesn’t discriminate or care about material things. What if instead of fearing those that are different, we could celebrate their uniqueness, learning from their life experiences and make space in society to allow everyone to share their knowledge to make a more rounded, inclusive and compassionate world? Wouldn’t that be nicer world to live in?

We’ve all been asked this question at some point, right? Now, as someone with a chronic illness and disability I can absolutely understand the frustration within our community about suggestions or magic 'cures' proffered to them by often well-meaning loved-ones or sometimes nosey strangers. One of the most complained about though, is yoga. Well, I’ll let you in on a little secret, 5 years ago I embarked on my journey to retrain as a yoga teacher…bear with me here, don’t run away yet…

As a plus-size, disabled yoga teacher, I do not fit the norm - literally and figuratively. I went to yoga as a student because of my illness and disability but I became a teacher because there wasn't a safe space for me or people like me, to engage in yoga.

Yoga in its current broadest and westernised view, especially for the novice, has too much ableist BS for disabled people to wade through before you get to the purest parts that can actually offer you some benefits as someone with a chronic illness or disability. That's the issue, not 'yoga', it's the way yoga is packaged to a certain mainstream demographic. 

Yoga has got an image problem. As a qualified yoga teacher that exclusively teaches classes for those with persistent pain, chronic fatigue and long-term illness, I see it every day. When I first started yoga, there wasn't anywhere or anyone that represented my needs. It's not yoga that's the problem. I have spent the last 5 years growing a community, providing a safe and engaging environment for people like me to engage with aspects of yoga that support their wellbeing without causing a flare up of symptoms that people can report after going to an 'off the shelf' yoga class. It's not a cure, I can't even promise it will make everyone feel better, but the kind of yoga I teach gives people a chance to experience the good stuff without all the faff. 

There, I said it. I will circle back to the wonders of yoga another day, but I just want people to know that yoga can be good for people like us, but I also totally agree that people who say ‘But have you tried yoga?’ should be told to keep their unsolicited advice to themselves. Feel free to take creative license with your word choice!

Using mobility aids is a funny thing. It doesn’t matter what age you are; most people struggle with the transition. I’ve spoken to people in the teens to their eighties and every person I have spoken to about their conflict, deciding whether it is the right decision for them, says something along the lines of “But I’m too young / too embarrassed / too independent to give in”.

So, if mobility aids aren’t for the young or the old or those somewhere in the middle (including myself), then who are they for? It seems it is of the general consensus that mobility aids are for those with transient injuries or for the later stages of the inevitable old age decline. If you use them for any other reason, people deem it as some kind of personal failure. To be clear – it is not. It seems as a society we shame people for using them so it makes sense that we struggle to accept the help that mobility aids can offer us until far beyond when we perhaps should have started using them.

I too, have had this battle with my own ego in recent years. Having learnt the hard way, I have now started to accept the use of mobility aids in my life, which has happened in relatively short period of time. Once I got over my ego (embarrassment, anger, disbelieve, negative self-talk), I discovered a wonderful thing – I could be more independent by using mobility aids. Mobility aids mean that my limited energy reserves last longer.

Most of my own negative self-talk is unfortunately a product of unkind interactions with my own flesh and blood. A painful and ingrained rhetoric that was imposed on me in my formative and younger adult years, until boundaries were painfully established. You know the ones “You’re useless, fat, lazy”, those core things that you think about yourself because you were told them so often by those that were supposed to love and care for you, that they must be true because you didn’t know any better. Yeah, of course they have the same view when it comes to long-term illness and disability, and by extension the use of mobility aids. Honestly, I’d love to say this is a resolved issue left in the past, but alas, in the words of Mark Twain “Never argue with stupid people, they will drag you down to their level and then beat you with experience.”

A few years back, having not been diagnosed of the cause yet, although having lived with multiple health conditions and disability for a number of years prior, I found myself very poorly after a long-haul flight. I couldn’t walk, I had no energy and to make things worse, our dream holiday destination was an active holiday in temperatures in excess of 90 degrees Fahrenheit with 80%+ humidity every day. Determined to ‘power through’ and ignoring the pleas from my Husband, I would not use a wheelchair. However, two days into our holiday, I broke down on a bus in front of an uncomfortable, yet literally captive audience in a situation that none of us could escape. From the outside I was crying like an overtired toddler, seemingly because we’d been caught in a monsoon rain shower: my shoes were wet and my long-awaited gluten free cupcake had fallen through the bottom of the paper bag they had packaged it in for me. In reality, and not to any surprise of my extremely supportive and patient Husband, I was in agony. I was physically and mentally wrecked. I was in unimaginable pain with a level of fatigue I have never experienced before. That afternoon, we arranged for wheelchair hire for the rest of our holiday.

The majority of people we came across were helpful and considerate but it wasn’t the greatest feeling for me, I felt that I had somehow let myself and my Husband down. In hindsight, if I had used a chair from day one, I may not have ended up using the chair as much as I ended up needing it.  We had the best holiday, a truly once in a lifetime experience, and I don’t look back regretting any of it. I am just grateful that I was able to experience as much as we did, because without the use of the wheelchair, I couldn’t have done a fraction of it.

Fast forward a few months later and following my diagnosis, I was looking into and coming to terms with, getting my first mobility aids of my own to help me in my daily living. I wasn’t really sure where to start, so I took to YouTube for information and vlogs on different types, brands and general pitfalls. We also went to visit mobility shops, but what we very quickly learnt, is how expensive mobility aids are! Unbelievably pricey and for not great quality at the ‘lower’ end of the scale. Once I had been able to try out various types of aids, and made some decisions on what I needed, I took to the internet, and searched for what I wanted second hand. I will do blog on the tips and tricks for choosing mobility aids another day.

My first mobility aid was a rollator bought for a fraction of the price it would have been new. She has made such a difference when I know I am going to be out for a short amount of time, but know I will need to sit down regularly, especially the supermarket. The first time I went out with my rollator, I went to the beach. Immediately I knew I wouldn’t be able to use her on the shingle but for a first outing we walked along the shoreline path. I was hyperaware of other people. Luckily it was a quiet day and there were only a few people out. On our walk I had noticed a young girl and her mum looking, I had tried to ignore it and smiled nervously as we passed them. Later on, we passed them again going the other way, at which point they stopped and asked about my rollator. It turned out that the young girl had a similar condition to me and had been looking for a rollator that had a younger person look to it. We spent time talking to them, sharing experience and tips. As it turned out, that first trip out with a mobility aid was really positive. Since then, I have added to my mobility aids, allowing me maximum flexibility and support when I need it.

It goes to show, you don’t know why people are looking. We can’t know what people are thinking and mostly people are just curious. You will get the odd individual that speaks up – positively or negatively, but remember that if it is negatively, then that is a reflection of them, not you. I am much more conscious these days when I look at others with mobility aids. I am usually curious about what it is they are using and looking at the functionality of it but the person wouldn’t know that so I actively try to engage positively, complimenting or asking questions about their mobility device.

Choosing mobility aids that are right for you is a journey and you won’t always get it right first time. It has taken me time to know what type of wheelchair suits my needs and when to use the rollator or take a stick instead and I still don’t get it right every time. Just remember, choosing to use a mobility aid is not giving up. Mobility aids are there to make your life easier, like taking the car to the supermarket or using a bag to carry your shopping. They are a tool to improve your quality of life, don’t let anyone make you feel like less for being able to do more.

Contrary to modern advertising, January is a time for rest, reflection and conserving energy, not a time for starting anew. Nature’s new year happens in the spring, so why do we force ourselves out into the cold and the dark, instead of restoring ourselves as nature intended?  

Due to my health, and trying to adhere to the rules of nature by embracing the rest my body so craves, I haven’t been able to get to the shore as much as I want or need this month and that has been hard. I am not usually one to subscribe to the notion that January feels longer than other months, but it does feel like it this year. The start to the year has been a bitterly cold one. The days have been changeable, flitting from crisp and bright to dark and wet, sometimes within a few hours; whilst the nights remain dark and long.

To many, the winter months can seem bleak. The grey blanket that covers the sky, the damp mist that lingers in the air and that hue of brown that seems to envelope everything underfoot. My favourite combination on a winter’s day, is a cold crisp sunshine filled day and a dark restful night. On the rare occasion we have one of those perfect dry and bright days, there is nothing like a winter sun. The warmth it brings penetrates the skin like the rain after a long drought.

It seems like a contradiction that being cold by the sea would make me feel better when my arthritis is at its worst this time of year. The damp and cold weather creates pressure changes which increases pain in the joints and exacerbates fatigue, but somehow, it never seems as bad when I’m bundled up by the sea, even on the bleakest winters day. I have to assume that the positive impact on my wellbeing is both emotional and physical. In the winter, daylight hours are short and the tides less easily predicted when the weather is inclement. On the occasions I have been able to make it to sea throughout January, I have been met with the various personalities of the ocean; calm low tides, raging storms as well as quick turning tides that have flooded my boots. The shoreline and the ocean are a constantly changing picture, but yet somehow manage to bring a seasonal consistency that inland and wooded habitats lack.

Whilst the ocean has its own cycles, including seasonal tides affected by lunar and solar gravitational pull and alignment, it has a consistency to its unpredictability and, what I love most, is the oceans’ ability to be whatever it wants to be, regardless of the season. What I mean by that is, you can have a rough, summer sea or a mill pond winter tide.

One of my adventures to the beach this month was at the turning point of a stormy high tide. I hadn’t known the tide times at the time of deciding to go, it was a visit of opportunity. I had my coat, but very little in the way of protection from the elements and I had merely planned to sit in the warmth of the car, observing the waves. But as I got out to buy a parking ticket, I felt like the ocean was calling to me. I have never seen a tide so high along our local shoreline. It wasn’t that it was the peak of high tide that particular day, but the fact that the storms and seasonal tide meant that waves were literally breaching the sea wall. I decided to take a walk initially along the paved path, giving the ocean a wide berth, but that wasn’t enough and every few steps, I was drenched with ice cold salt water. The first wave was such a shock that I laughed out loud (along with those who had, perhaps more sensibly, chosen to watch me get soaked from inside their cars). I could have returned to the car, even gone straight home, but I felt compelled to continue walking, even getting closer to the sea wall in the hopes of further salty lashings. It was exhilarating, I laughed every time, and when I reached the small section of shingle beach that wasn’t covered by the raging storm, I noticed the tide turn. The water was beginning to recede and in its place a bounty of driftwood.

Now if you haven’t guessed, I love collecting driftwood (along with shells, stones and fossils) so once again, despite my screaming body, I felt magnetically pulled along the shore picking up driftwood as I went, like the bird following Hansel and Gretels trail of breadcrumbs. I must have provided some great entertainment for the onlookers that day. Drenched from head to toe, barely able to see through my glasses, I became acutely aware that I had competition for my haul of driftwood. It’s happened to me before, but the source of this rivalry might surprise you. It’s dogs. Yes, you read that right, dogs. I get chased by dogs a lot, I mean imagine walking along and seeing a human with an armful of sticks. Of course you are going to ask for one, perhaps even take on. I usually stop, and with owner permission, offer one of my finds to my stick loving companions like an offering to the gods for safe passage. On this occasion, said dog was not satisfied unless said sacrifice was thrown, something his curmudgeon owner did not seem to want to engage in. So, I proceeded to be chased along the beach by said dog in a storm, until his owner eventually threw a stick to relieve me of my duty. So, as I say, I was something of a spectacle that day, but I enjoyed myself. Needless to say, that little adventure, whilst the most fun I had had in weeks, set me back a weeks’ worth of spoons. If you’re not familiar with spoon theory, I will be talking about that another day in more depth, but for those of you who aren’t spoonies, I was exhausted and flat out of energy for the days that followed.

As the month draws to an end, the mornings are noticeably brighter and the afternoons are staying lighter for longer. I am excited for the month ahead and keen to explore some new fossil sites I have recently been told about, whilst trying to get better at pacing and managing my pain and fatigue during this variable winter season.