Monthly Archives: December 2017

Living With Invisible Illness

 Every day there’s a new story showing up on our news feeds about how someone with chronic bowel disease was refused access to toilets while in town or how someone was left a note telling them off for parking in a disabled parking bay when they don’t have a wheelchair.

There is a huge amount of ignorance in society about what illnesses actually “disable” people enough to warrant them disabled access or emergency bathroom.

First of all, there are more illnesses that disable individuals that are hidden, or invisible, than there are visible disabilities. For everyone in a wheelchair, the odds are you could find 5 more people in the same car park who have an illness that disables them physically or mentally on a long-term basis.

Secondly, there is a poor understanding of the ways in which many illnesses affect the individual afflicted by them and how they are classified as a disability. Not only that, but illnesses fluctuate. What might be possible one day might be impossible the next. It is entirely possible that someone may be walking around town unaided on Monday yet needing to be pushed in a wheelchair on Wednesday.

Thirdly, it seems that society doesn’t fully see that what a disabled person shares online might be things they can do maybe only sixty, fifty or even as low as five or ten percent of the time. A day out at the zoo. Training and exercising. Life is as up-and-down for disabled persons as it is for healthy, able-bodied people.

Finally, there is a lack of awareness of the wide variety of reasons disability access is allowed and needed by some people and the situations in which such concessions need to be made.

I can’t address every problem, every illness, every possible situation. What I can do is try to explain life with an invisible illness and why society as a whole should never judge based on what they witness at any single point in time.

I will use myself as an example. I am on the lupus spectrum, meaning I have many of the symptoms of lupus but not all. Put simply, based on history, tests, scans and symptoms it’s more likely to be lupus than other rheumatic diseases. Inflammatory arthritis is involved. I also have fibromyalgia. My symptoms include extreme sensitivity to heat and cold, a sensitive digestive system, irritable bowels, chronic fatigue, exhaustion and lethargy, a fluctuating appetite, swollen joints, joint pain, muscle pain, nerve pain, constant headaches, fevers, brain fog (includes problems with focus, memory loss, concentration difficulties, forgetfulness, frustration, irritability) and severe physical pain – I’ve needed an ambulance on two occasions in the past year, needed to be lifted out of bed and dressed by my husband, and I’ve tried a dozen different medications which all come with a long list of potential additional problems in the form of side-effects.

On a really bad day, I can be seen visually as being disabled. I might need crutches or a wheelchair. I might need to stay with my husband or mother at all times. But for the most part my disease is under much better control now, so I’m able to drive myself, to walk around town, to do two hours of yoga, take days out…I can physically do much of what I want to do. But here’s the thing: if I don’t pace myself i.e. limit and take great care over the way I expend my energy, I’ll be so fatigued I’ll just sleep for the next 3 days, and I could be in enough pain to need morphine.

A huge number of illnesses act in very much the same way. They fluctuate. Sometimes the invisibly-ill will be on a really great run, doing very well, but what you on the street don’t see is that it’s as a result of many appointments with NHS specialists, a dozen medications, a therapist, weekly check-ins with our GP. All of this comes at a huge cost to the NHS. The more we aggravate our condition the more we need those services, the more time we will have to take up from our overworked and in-demand NHS staff and the more drugs we will need, using up time, resources and NHS funds.

Sometimes what aggravates an invisible illness is walking longer distances. Having to stand at crossings to get where we need to. Having to carry heavy shopping bags further back to our car. Sometimes even if we look and act okay it’s already been at a huge expense and the use of a disabled parking bay prevents us needing to use up still more of the NHS’ valuable time and money. Perhaps if we don’t use it, we will gradually or maybe suddenly get a lot worse and be completely unable to work, or to be the mother/father, wife/husband, friend and member of society we want to be.

Not all disabilities are physical, either. Mental illness is a disability. This is a difficult concept for anyone who hasn’t struggled with a runaway mind or a chemical-imbalance of the brain to understand. My experience has proven mental illness can not only be debilitating and life-limiting, but life-threatening. An illness of the mind isn’t something that can be shaken off; it can’t be taken away by popping a pill or saying to yourself “get a grip!”; there are no fast or instant fixes, and many symptoms manifest within the body in addition to the psychological aspect. I’m now 28 but have suffered severe anxiety, agoraphobia and emetophobia since the age of 7. In the twenty-one years I’ve suffered I’ve had three nervous breakdowns (now known as being “in crisis”), and I’ve also developed panic disorder, depression, mood disorder, suicidal ideation and turned to self-injury as a coping mechanism. I’ve had more private therapy than I have had therapy on the NHS, but I take medication, again prescribed by the NHS.

Mental illness fluctuates just like a physical disease. Mental illness can cause a vast array of physical symptoms: overwhelming fatigue, lethargy, apathy, brain fog, nausea, diarrhoea, trembling, weakness, sweating, hot flushes to name but a few. It might mean that we need to park our car closer to the shops to limit the amount of time we spend in town. It might mean we need to carry a disabled-access card so that we can use more toilets than the rest of the public because our anxiety has turned our bowels to liquid. It might mean we avoid certain things for certain reasons.

Most people think the only purpose of disabled parking and disabled toilets is to allow room for a wheelchair.

The reality is that there is a great deal more to disability than physical body impairment and missing limbs.

It is possible to be in too much pain to walk, but the next day be on the yoga mat in Downward-Facing Dog.

It is possible to be carrying a toilet-access card but to go on a walking holiday.

It is possible to take a flight, a train and a coach, but to not be able to drive yourself.

It is possible to walk up and down a mountain one day, but be unable to step outside our very own front door twenty-four hours later.

It’s possible to be able to eat a three course meal at home, but to be unable to eat anything out, even if it means going the entire day without food, making us very weak.

We might look fine. Some days we might feel pretty good. But our “pretty good” is your “pretty rough” day. We don’t have the “feeling perfect” days many of you do. The best we can hope for is to manage our conditions. Sometimes all we want is to be free from pain, to have some energy, or to just act normal for one damn day. If that means that using a disabled bay, having access to disabled toilets, or if other concessions need to be made – then so be it. We shouldn’t have to feel guilty about that. We shouldn’t be made to feel guilty for a disease we didn’t ask for. We shouldn’t be made to feel that we can’t share our achievements just because we need to make some things in life a little easier on us. We have every bit as much right to shop without being in pain, to walk around town without being afraid we can’t reach a toilet, to hit the zoo with our family without being too petrified to go because the only parking space might be a five minute walk away!

I have multiple disabilities. But I do yoga. I do advanced yoga as I’ve practiced it for 5 years now and it helps my mind and body. I do whatever my body is capable of doing in the moment without causing it any extra pain. It usually relieves pain, if anything. And yet the sad thing is that my old employer, who I thought understood my different conditions, blamed my yoga for my lupus and my wheelchair for my arthritis. She suggested that doing the splits is what causes my joints to seize and why I’m in so much pain and she got fed up of the reasons I would come back to her with for why I didn’t work at a certain time (even though I always more than made up for anything, and we never – not once – missed a deadline). Needless to say, I no longer work for her, and it is this kind of ignorance that makes it so difficult for so many others with hidden illnesses to cope with day to day life. My old employer had intimate accounts about all my illnesses yet I was still treated with deep ignorance and disrespect.

Put yourself in someone else’s shoes:

Imagine how hard it is for you, as someone suffering in silence, dealing with chronic pain or mental illness or any other invisible disease, to go out in public, to go to work, to run a family and a home.

Imagine if you could do all of that but you are given a few tiny miracles; things were made just a little easier for you as you are granted special access to toilets or able to park in a disabled bay so you don’t have to walk as far to your doctor or to the shops.

Then imagine being handed a note when you come out of the toilet saying you’re a disgusting human being for blocking a disabled toilet when you should just wait in line like everyone else, or you arrive back at your car to a note on your windscreen saying you’re a piece of scum, that you are blocking a space that is needed by someone who actually has a disability. Or you’re approached in the park while you’re doing yoga to be told, “Oh I saw you! You’re not disabled, look at you! Get your car out of the disabled bay because you clearly don’t need it.”

Life is hard enough with invisible illness. It actually helps us to still feel needed, to still feel that we have a place in our community and a job to do and a family who needs us. Sometimes we need help to do those things though. Whether it’s easier access between our car and our destination, ready access to toilets, special requests on where to be sat in a meeting…whatever makes us able to function and serve just like everyone else. We don’t like to bring our illnesses to attention. We’d rather hide them away and pretend we don’t have them because we know we’ll be treated differently, usually in a negative way…but because of such attitudes, people like me (who have years of advocacy, media work and blogging about illness to raise awareness) have to lay ourselves out and sacrifice our own energy to try to get the world to understand. The thing is, the world so often doesn’t want to understand. It’s easier for people to judge and not question their judgement.

When society makes things harder for us by passing judgement on something or someone they know absolutely nothing about, they make it so much more likely that those people who secretly fight so hard to serve and work and simply survive, will just want to give up.

By accusing the invisibly ill of faking it and of being a waste of space or pathetic and lazy excuse of a human being, you might just lose one of the key members of your community. All over an assumption that because someone has all their limbs and can move them, they are in perfect health.

If you really have to say something and you can’t hold your tongue, my advice is this: offer to help. Don’t ask. Don’t judge. Don’t assume. A little compassion goes a long way. The odds are you’ll learn something about the true nature of disability that you wouldn’t have known before.

Protect Your Yoga Property!

Having seen an increase in sharing accounts without accredited sources for their content, it would do social media users well to read the following. If you post images on social media, particularly Instagram, you need to be especially aware of this.

Even though it isn’t possible to directly lift photos from Instagram, it is possible to get hold of the image without crediting the source, via a repost/regrann app. What usually happens is if you want to repost someone else’s image – say a flyer for a yoga challenge – you’ll download your reposting app, hit the three dots next to the image, and go ahead and “Re-gram” the image. What these apps do is they automatically save the photo to your device AND copy the text that goes with the image with a note either on the image or in the text stating the original source (e.g. “Regrann from @lauradestefyoga”).

What too many sharing accounts are doing is uploading the photo and not pasting the text or tagging the owner. They post the image with their own hashtags and promote themselves. No mention, no credit, NOTHING to suggest that the photo they have just posted does not belong to them. Under Instagram rules this constitutes “impersonating another user”. Under wider law? Theft of intellectual property.

If you are a sharing account you’ll gain credibility through crediting your sources. Us yogis love our work and words being shared. What we don’t love is someone taking our photos and using them behind our backs without acknowledging that they don’t own them. You’re gaining followers for something you haven’t spent 10 years of your life working towards being able to do. That’s not cool.

Most of the accounts who don’t share nicely ignore all comments requesting accreditation. Even when it’s the owner of the image themselves asking them. They simply don’t read the comments. Or if they do, they ignore them. Which makes them even less deserving of the tens of thousands of followers they have. Integrity is everything.

If you’re a sharing account and you credit your sources: thank you! We’re cool with that. We’re glad you like our work enough to share it AND to say to people “hey, we think @abcdexyzyogaetc is SO awesome here’s what he/she/they can do”.

If you are a yogi who has had their work stolen by a sharing account, then you need to report it. Instagram are known for being shoddy with their customer services but keep pushing them. If another account is posting your images without your consent and without tagging you, it is theft of intellectual property and under Instagram law they are impersonating you. By Instagram’s own rules this is not allowed. So pursue the accounts who lift your photos and report them to Instagram every time they do it.

It may help somewhat for yogis to begin either watermarking or putting a noticeable text line on every photo posted so that, if it is lifted and reposted, at least you know the image is still linked back to you and everyone who sees that image will see your Instagram handle and know the photo does not belong to the sharing account. There’s a chance that, if the sharing account is being deliberately unlawful, they might try to manipulate the photo and erase your mark. So try to position it on the image so that the photo itself will be compromised if they try to colour over your text. A tiny line in a corner is no good. Better than nothing but so so easy for sharing accounts to remove. I know it detracts from the image but until Instagram gets its act together and stamps down on accounts posting images that don’t belong to them, or until the people behind these accounts develop a conscience, we’ll have to do something to protect ourselves.

It is a compliment to have your photo shared. But the biggest compliment is to be credited for it.

Yoga & Instagram

When you start out on your yoga journey, what inspires you? Why do you come to yoga? Why do you choose this particular path? And is it something you’re going to share with others? Keep to yourself?

Whatever the reason for beginning yoga, if you choose to share your yoga journey it is important to remember a number of things. I speak as a yogi who for 3 years didn’t share my yoga journey, but at the time was sharing my mental health journey. Then two years ago I switched my focus to sharing my yoga. I joined Instagram. I posted a LOT of photos on Facebook. (Although I was kicked out of a Facebook yoga group for posting a photo of me in shorts on a hotel bed stretching my legs in Happy Baby pose so I’ve never been one for yoga “groups”.)

Anyway. Some pointers for you. If you do want to post your yoga journey to Instagram (or other social platforms) you need to ensure you never stray from the reason you started yoga. To be fair if you started yoga just to post cool photos, it’s not the best reason to begin yoga – but everyone starts somewhere. I started my own yoga journey as I needed to find a fitness routine that suited my tricky circumstances: I needed something gentle on the joints, that I could learn and practice entirely at home and on my own. Arthritis + agoraphobia + social phobia is the perfect recipe for yoga. I began with the Wii Fit, then I learned to create flows by following a DVD, and then I took the leap and started working entirely on my own, putting my own flows together. I gained so much more than physical strength, balance, flexibility and fitness though. It helped my mental health immensely. My spiritual journey began as soon as I realised that my dedication to the physical asana was inextricably connected to my mental and spiritual wellbeing. Yoga spoke to my soul and healed some very painful memories and events.

Then I began filming and taking photos of my practice and sharing my love for yoga on social media. Learning to navigate Instagram was a journey in itself. It’s hard to maintain a balanced ego. Sometimes when you’ve worked for 5 years to achieve a pose, you post it full of so much happiness and joy and, if you don’t use the right tags or you don’t have the followers, you might get 5 or 10 likes.
Reality: it’s disheartening. You feel like, “what’s the point” and you compare your pose to others that have done exactly the same and got 11,369 likes.
Reality: likes are not everything. If YOU are proud of your achievement then posting it online should be about creating an online journal of your progress and achievements. Think of your Instagram as a personal diary. A timeline of your yoga journey. It encourages you to think more realistically about social media and brings you back to why you started yoga. It’s all about balance. If you feel your ego getting too big (“I deserve more likes than that!”) step back, stop filming your flows for a week. Spend some time on Instagram supporting other yogis. Then come back to posting with a fresh mindset. Gratitude is important.

Something you will also notice is that some of the big names in yoga have a huge following and you might not be able to understand why. For example, I’ve practiced yoga for 5 times as long as some of the Instagram yogis who are trained yoga teachers but have only been practicing for one year yet have tens or hundreds of thousands of followers.
Reality: it’s disheartening.
Reality: yoga isn’t just about amazing poses and pictures or videos. It’s about being authentic. Yogis especially are very astute at spotting who is authentic and who is more egotistical. Why not try being open about your emotional and spiritual journey? Make your captions count. Talk to the world. Be honest. If you faceplanted out of that crow after 0.025 seconds? Tell your followers! They will love you for it. Share your downs as well as your ups. Part of your journey as well is realising that social media is the least important part of your journey. There’s no point pretending it isn’t part of the journey because in the modern day, it just is. It’s very natural and normal and of course lovely to feel appreciated and recognised. It’s better to be respected by fewer people who have a lot more of a genuine feeling for you, than to have a massive number of followers who really aren’t all that interested and couldn’t name you if anyone asked them!

As weird as it might sound, something you will also quickly come across is yogi sponsorship. Some of the clothing brands who specialise in yoga kit sponsor certain yogis in return for promotion through the yogi’s posts. There are so many incredible, big-name brands out there and it can be very hard to understand how or why these yogis were selected to be sponsored and gifted these stunning clothes (or props, in some cases). It usually comes down to number of followers and consistent style of the yogi’s photos: they’ll select people who can show off their items in ads every day to a massive audience. Of course these clothes are too often unaffordable to the average Instagrammer, and many “make do” with sweats or joggers and sports bras off the high street which are incapable of holding your boobs in place whenever you get inverted.
Reality: you feel disheartened and left out if you can’t afford what is basically advertised, inadvertently, as “the best yoga clothing”. Because this stuff looks incredible and you see so many yogis wearing the clothing. The subliminal message is simply that the best yogis wear the best brands.
Reality: clothing doesn’t matter. What you wear means nothing. It does not make you a better yogi and wearing top brands will not make you a better student, practitioner, teacher. The only reason we notice what a yogi is wearing is if they point it out, or if it’s unusual or unique. Plenty of people go so far as to practice in their underwear, bikinis or even in the nude, and yogis – men and women – of all body types embrace this and still do incredible yoga. Having lovely, top brand yoga clothing is a nice feeling but most of your followers will not care what you’re wearing.

When you put yourself out there into the virtual world, it’s a peculiar version of reality. It is real but it isn’t. It’s modern life. We usually see the result but not the journey. We can’t change the way social media works. We can’t all be sponsored, we can’t all have 100k followers, we can’t all write the perfect caption or post the perfect crystal-clear photos. But we can be authentic. We can be honest, we can be ourselves. We can make our personal Insta-Gallery real and a reflection of our physical and emotional journey. We can make it whatever we want. That is where our power lies. We can be ourselves, and that is enough. We are enough. Just as we are, in that moment. The right people will find you. The right number of people will find you. It might take time, but people on your wavelength, people who emit and absorb the same vibrations, will be drawn to you.

Instagram brings you full circle and can teach you important lessons that better you as a yogi. You start yoga to better yourself. You share your yoga and through the journey of building “your” community and finding your place in the larger Insta-Yoga community, you have to learn to maintain your focus on your journey and your authenticity and discover the place of the ego, what it is to be human and how to manage the more complicated challenges your mind brings up.

I come back to the message I love to put out there as much as I can: yogis are, at the end of the day, human. Even the best, happiest, most perfect yogi in the world is human and started where you are. To be a yogi simply means to be on a journey, a lifelong self-development adventure which has no ending.