Category Archives: Identity

Guest post: summing up

Elaine is the partner of the author of this blog. You can read Elaine’s other guest posts on the tagged page.

Thankfully, I have come to the end of my short career as a ‘blogger’. Over the last few weeks, I have tried to share some personal perspectives on supporting someone with Myasthenia. I hope you found them even slightly useful.

Extracting some themes from the jumble of words in my blogs, I will leave you with the following summary of my ramblings

1) having a team is important – yours can be made up of anyone who has a positive influence in your life.

2) Communicate with your team – tell them what you need and don’t feel guilty or awkward about it.

3) Try to put your pride to one side – by letting people help you, it will indirectly help your partner.

4) Know your boundaries – to help you be a supporter, there are some things you may need in return from your partner e.g. communication, being involved in decisions and compromise.

5) Be patient – you can’t fix everything.

6) Google is a horrible place – stick to the facts and avoid the ‘but what ifs…’ where you can.

7) Guilt is not constructive – try and focus on all the good things you can and have been doing to support rather than what you can’t do.

8) Unspoken thoughts can be there to protect you – there is often a nugget of value in the middle of the madness:

9) Be kind to yourself and be kind to each other – you’re both already doing great.

My final point is the most important of all:

10) Give a big two fingers to Myasthenia – When Laurna got diagnosed, I quickly learned that there was a time for talking. Retrospect has shown how important it was that there was also a time for not talking; just being us, having fun and enjoying the life we had chosen together. 

When I look at Laurna I don’t see someone with Myasthenia – I see Laurna. A person who is passionate, smart and kind. A person who I can’t spend enough time with. I completely refuse to let Myasthenia change that – there are so many more interesting and fun things about Laurna and she will never be defined by her condition in my eyes.

So there you have it. If you have made it this far, thanks for reading. I am really looking forward to hearing about other people’s experiences.

 Like Laurna, I have much to learn and more bridges to cross. I always appreciate the support and perspective from the Myasthenia community and can’t wait to read the next instalments. 

268/365 -Myasthenia gravis around the world

Facebook is a wonderful thing not least because of all the interesting content that gets shared by the people we choose to surround us in the virtual world. Last week, one of my connections, and a member of Myaware, posted this fantastic map of Myasthenia Gravis around the world.

Hosted on the disease map website, this crowd sourced map asks people to add themselves and you can see that there are very few continents which aren’t touched by MG – Asia looks like the least affected but I imagine this may not be translated into different languages?

 
As you can see from the image above, the purple sign of women dominate this map so if you are a male with myasthenia please add yourself to it so the tool gives a better reflection of those affected around the globe. This is probably due to the fact that MG tends to affect women at a younger age and they are more likely to be digitally savvy due to being younger.

When you zoom into the map, you can click on the individual people to see the information they have added (like the image below). This means if it reaches a wide enough audience this map might even be useful for research or collaborating on awareness raising/fundraising around the globe. It may also be useful to see if there is someone near tou with the condition – it help us feel less alone . 

If you haven’t already added yourself to this map (which I haven’t) then please do so if you feel comfortable.  

247/365 – Remembering what makes you happy and finding time to do it

When you have a condition like myasthenia, it can feel all consuming. There’s so much to think about that often you’re left with little room for anything else. It’s no wonder then that people with MG can be left feeling low and anxious. 

I’ve found to have a good quality of life with MG, it’s important to remember what it is that makes me happy. When I feel like I don’t know what that is, I try something new. If that’s not ‘the thing’ then I try something else. Sometimes it can be difficult to motivate myself and that’s ok. Each time I do though, I’m always left feeling more positive about everything including the myasthenia. 

Last night, I made time for a walk with the good company of my friend Kate down by the river – one of my favourite things to do in London – getting a bargain burrito and an episode of a TV series I’m enjoying, Peaky Blinders. The picture above is on the bank of the Thameside with some scupltures that are part of a festival being hosted there. All simple pleasures but effective in making me feel happy. Even if it’s just half an hour every couple of days to do things that make you happy, I find allowing myself that short amount of positive time makes a big difference to how able I feel to cope with the myasthenia. 

Some other things that have the same impact on me: Going to the cinema, salsa dancing (and so many other things) with Elaine, any kind of catch up with any/all of my best friends, Gemma, Steph and Sarah, reading in bed on weekend mornings, having open conversations with anyone, the endless possibilities of a Friday night train up to Edinburgh, the feeling of infinite options during Friday night drinks, having a glass of wine while speaking politics with my parents, getting out into the middle of nowhere for a walk or cycle, exploring somewhere new, long baths, the first sip of a good cup of coffee….I could go on and on.

Even just writing out this list made me happy. 

241/365 – Checklist for when you first get diagnosed with myasthenia gravis

It occurred to me today, while finally getting around to sorting out my driver’s license, that it would be really helpful to have a checklist of things to do when you are first diagnosed with myasthenia. The first few months after diagnosis are very confusing and I know I would have appreciated anything to make it easier. I’m pictured above in my first months of MG unable to take my sunglasses off even at night. Here’s me today.   

Below is the work-in-progress checklist for people in the UK (please get in touch if there’s anything I’ve missed and I’ll add it on): 

  • Book an appointment with your GP: If you haven’t already done this, book an appointment with your doctor so you can get referred to a neurologist/specialist/consultant. It’s also useful to update them about your condition as it’s likely you will be getting your prescriptions through them.
  • Allow yourself time to grieve: No matter how you take the news about having myasthenia, allow space to grieve in your own way. The worst thing you can do is be hard on yourself at this time – whether you can’t stop crying, you’re numb or you want to fight it head on, be kind to yourself during the acceptance process. 
  • Identify support – No matter how cool you think you are with the condition, it’s important to have people you can lean on during the weeks and months that follow. 
  • Get involved in a support group: No matter how many supportive people you have around you, there are certain things they won’t be able to fully understand unless they have myasthenia. Getting involved in a support group, like Myaware in the UK, can help you through the process of acceptance. If you don’t feel strong enough (physically or mentally) for a meetup, you can get involved online via the various Facebook groups.
  • Read up on your condition: Myaware has lots of information on myasthenia, medication and coping with your new condition (not as scary as other material you may get when you google).
  • If you’re struggling to cope, get free counselling: If you are struggling to cope with your diagnosis, Myaware offers free counselling to members or ask your doctor about free NHS counselling. It’s a big change and it’s ok to ask for help to get through it.
  • Notify the DVLA about your condition: If you drive, you’ll need to fill out a CN1 form to alert them about the change in your health. They will ask your consultant and doctor if you are fit to drive. 
  • Claim your NHS card to get free medication: More information about the medical exemption card you are entitled to when you have myasthenia gravis on the NHS Choices website.
  • Getting free/cheaper travel: If you are no longer able to work and/or your condition is making it really difficult to get around, you can apply for a disabled persons rail card, a blue badge if you drive and, if you stay in London, a freedom pass.
  • Remember myasthenia is only part of who you are and it doesn’t have to be all bad: When you are first diagnosed it can feel like your life is dominated by your condition due to never ending hospital appointments and doctors visit. It will calm down and your life may well get back to near enough normal. In those early days, it’s important to try to find the positive changes of your journey. Although it doesn’t always feel this way, it could be a lot worse.

That’s all I can think of for now, so please get in touch if there’s anything I’ve missed.

222/365 – Creating art with myasthenia: Chinwe Chukwuogo-Roy

Having a rare condition has meant I am always on the lookout for MG role models who manage to fulfil their potential and don’t let their condition hold them back. Particularly, due to my own situation, I’m always looking for those who have had the illness throughout their life rather than being diagnosed with it in later life. This weekend I’ve learned about Chinwe Chukwuogo-Roy – a Nigerian artist who battled MG from her teens and went on to be awarded an MBE for her art. 

Chinwe was born in 1952 and moved to the UK in 1975 to study at the Hornsey college of art and after graduating set up a graphic design business. Alongside the business, she continued to paint, make prints and sculpt. In 2002, she won international recognition for her portraits of Queen Elizabeth II and in 2009 was awarded an MBE. More information about her life and art is available here

Like all of us, Chinwe was so much more than just her myasthenia and looking at her art in the online gallery is inspiring no matter how interested in art you are. While I couldn’t see much written about her myasthenia, in the Guardian obituary it said she suffered from MG her whole life but it didn’t stop her creating beautiful art and being able to travel extensively. 

At Life with Art, an exhibition of entries to an art competition run by Myaware in 2013, Chinwe’s work is highlighted. The exhibition has been on tour around the UK – contact Myaware for more information.  

177/365 – Jealousy and myasthenia gravis

Yesterday, while on my Irish retreat, I visited Belvedere Castle. It has ‘one of Ireland’s greatest follies’ – the jealously wall. The faux medieval wall, which I’m pictured with above, was erected in the 18th century by Robert Rochfort to block out the view from his country home to his brother’s bigger house. This roguish Lord, who locked his wife up for 30 years on spurious charges of infidelity, got me thinking about jealously in general and in relation to my MG.

Jealousy in large, uncontrollable quantities is destructive – it breaks down relationships and reasserts feelings of low self worth. It can literally make you put up walls to block out others. In small doses, it can also be healthy for relationships – making you grateful for what you have – but keeping it in balance is difficult. 

Elaine put an interesting spin on Lord Rochfort’s wall – she said it was a defeatist decision. If he felt that strongly about it, he could have tried to compete with his brother or found things that were better about his house. He really should have stopped thinking about his brother’s luck and instead appreciated his own. As you’ll see from the picture below, he had a view most people would be more than content with.  

 Appreciating what you’ve got

As a competitive, ambitious person, jealousy is something I’m very familiar with. I’ve spent parts of my life being filled by it and those times were deeply unhappy for me. I could not see what I was lucky to have, nor could I develop my own strengths, because I was too busy focussing on what I lacked that others had.

I only found the answer to keeping my jealousy under control when I learned how to focus on my strengths, challenge negative voices in my head and distance myself from negative voices around me. 

Jealously and MG

When I got diagnosed with MG, I felt myself full of green envy once more. I was suddenly faced with a different future and I wanted my old one back. I was full of anger towards those who were unburdened by hospital visits, erratic symptoms and constant doubt about what tomorrow might bring. 

I didn’t blame anyone else for having this, it was my own fault, and that made the jealousy even worse. As a destructive force, it feeds on your own most negative thoughts and, at that stage, I was full of them. 

What am I jealous of:

  • people who can completely switch off and not worry about when to take their medication or when their next blood tests are due.
  • people who don’t have to take free healthcare into consideration when thinking about relocating.
  • people who can go travelling without checking whether the country has a yellow fever warning and without getting special travel insurance.
  • people who can go out partying and not be completely floored the next day.
  • people who don’t have to worry about passing their faulty genes on to their children.
  • people who can predict that if they look after themselves they’ll be and look healthy.

Get over it

So how did I get the jealousy under control the second time around? Once I was over the initial shock, I looked at what in my life had changed. There is more time spent in medical environments, and I had to take medication everyday, but I’m still able to do most of the things I could before. 

Once my voice and squint eye symptoms were under control, I no longer felt as self conscious. And even when I did, my good friend Anna told me the symptoms disappeared for her within seconds of being with me. 

I began concentrating on what I wanted and wanted to be, but this time I had more focus. I felt more in the moment and grateful of what I had.

Keeping jealousy at bay is an ongoing process and, if I start to feel negative towards myself, I can feel it creeping back in. However, having MG has helped me focus on what really matters – making every day count and being grateful for everything I am lucky to have.

122/365 – Rural life vs city life with myasthenia gravis

Last week I became a tad obsessed with a TV show – Outlander. Having read the Diana Gabaldon book that inspired the show at least five years ago now, the story of an English woman who gets transported back in time from 1945 to the Jacobite period through a stone circle, has never left me. When I saw the TV adaption, while flicking through my Amazon Instant Video last weekend, I squealed with excitement and binge watched series one over a few days. 

The series made me homesick for Scotland and also made me consider how life would be in rural Scotland. I’ve often thought about returning from London to Edinburgh later in life, but had never considered what it would be like to live in a remote part of the country. 

I imagine there are pluses and minuses to both. Here are some thoughts my homesickness has stirred up in me this week.

For

  • Easier pace of life – living in a remote location means accepting a slower pace of life. It would be difficult to adjust to at first, however I imagine I would get used to it quickly. I have no doubt this slower pace would be beneficial for my myasthenia.
  • Exercise in nature not pollution – whether cycling, surfing, kayaking, walking or running, I imagine doing these sports in raw natural surroundings will be less damaging to my lungs and body. Also what’s more inspiring than mountains and glens, lochs and waves, for the sports above?!
  • Working from home – I imagine if I decided to live in a remote Scottish location I would need to work from home at least part of the time. My experience of this at the moment is positive. Working from home gives me freedom on days when I’m feeling fatigued/don’t have the energy for the commute. While I would get lonely doing it all the time, at least part time wfh is definitely a positive perk for people with MG.
  • Fresh food – Living in rural Scotland, with it’s ample farm shops, would make securing local fresh ingredients a lot easier. With all the discussions about chemicals in supermarket products, being able up shop little and often from local suppliers would be a delight. 
  • Knowing your doctor – I have this  naive notion that living in a rural community, you’d have a better relationship with your GP. Having a doctor who knows you well, and is hopefully invested in your wellbeing, would make life easier for someone with myasthenia. A lot of the time, patients know more about myasthenia than busy doctors do and it’s difficult to break this down when you see a different one each time.

Against

  • Specialist treatment – living in the country would mean a long journey each time you needed specialist treatment. While well this wouldn’t be so much of an issue, but if your symptoms were flaring up, and more regular treatment was required, this could be difficult and expensive for you and your family. 
  • Travelling for work– If securing a job where you can work from home is impossible, jobs may be limited unless you are willing to travel. Travel times may be long if you decide to stay somewhere remote and may not always be possible. This could mean staying over night elsewhere several times a week, which would undo some of the positives of country life. 
  • Friends – it may be harder to make friends in the countryside where there is a risk of meeting more closed-minded individuals. Also living in the country would put me at a distance from my friends in Scotland’s cities.
  • Support groups – the Myaware support groups tend to be based in the big cities so I would either have to travel to attend or would no longer be part of the myasthenia community. This would be a challenge as I find being part of the community important and useful. At least there is a strong online community now with the Facebook group.
  • Risk of becoming an alcoholic– this mildly offensive comment is a genuine concern. With less to keep me occupied, I imagine my penchant for whisky and wine would grow. Still the stress of city life also doesn’t help this so perhaps it’s about finding a healthy balance no matter where I am.

While it’s not something I am considering right now, it’s clear from this list that it would take a lot of careful planning, and a bit of help from fate, to make a move to rural Scotlabd work for me. For the moment I’ll try to remember the negatives while falling in love with Outlander’s stunning scenery.


87/365 – Things people with myasthenia can learn from religion

As today is Good Friday, I decided to write about what can be learned from religion when you have myastheia gravis. I came up with this idea after seeing the amount of social media activity that linked having myasthenia gravis to coping with it through religion. People praying for each other and people writing about God’s plan for them dominate a lot of talk. Whether these people have found religion after their diagnosis or not is irrelevant, it helps them cope and it made me question whether there is something non-religious people can learn.

My history with religion

At this early stage I must confess that I do not subscribe to any religion. Although brought up going to a Christian Sunday school, I decided at a young age that I didn’t buy the idea of an omni-potent, omni-present, god and moved away to worship at the temple of Five and the F.R.I.E.N.D.S cast. In my late teens I swithered about converting to Buddhism after an interesting module in Religious, Moral and Philosophical studies. However the one thing I couldn’t get on board with was letting go of desire – when I desired something I felt truly alive and I wasn’t about to give that up. 

Since then, I have visited many sacred sites and read about most of the main religions, but I’ve yet to find one that fits for me. Buddhism is still probably the closest, but I’m not ready to fully commit.

Not religious but not quite an atheist

At university I flirted with the idea of branding myself as an atheist when thinking about how I identify. And then I met other hard-core atheists. They could be equally dogmatic, equally stubborn and no more like me than people who belonged to religions I knew little about. They always wanted to talk about why god didn’t exist – I had worked that out in my pre-teens so it didn’t hold much interest for me. I get it – it’s hard to let go of that need to disprove it when there is so much conflict caused by religion on a global scale. But the frustrated efforts are mostly wasted in my view. Yet any time I raised the potential positives about religion, they didn’t want to know. 

Things we can learn

Last year I came across Alain de Botton’s Religion for Atheists and it hits the nail on the head with so many points. It starts with ‘The most boring and unproductive question one can ask of any religion is whether or not it is true(it)…’ He continues ‘that it must be possible to remain a committed atheist and nevertheless find religions sporadically useful, interesting and consoling and be curious as to the possibilities of importing certain of their ideas and practices in the secular realm’. He goes to on to break down what a society that doesn’t believe in god can learn from religion’s sense of community, kindness, education, tenderness, pessism, perspective, art, architecture and institutions. 

So here are my thoughts, influenced by the wise Mr De Botton, about what people with myasthenia gravis can learn about coping with their illness from religions. 

Hope and acceptance

The people with myasthenia who also have a religious belief seem more hopeful. They seem less focused on when their suffering will end, and more content that it is, for the most part, out of their hands. I acknowledge the importance of having good medical treatment and as healthy a lifestyle as you can manage. Once you have those things, agonising over your condition can only do more harm than good. 

We can learn from the Buddhist idea of letting go, as it is believed that attachment is the root of all suffering. According to the Dalai Lama, we have pinned our desires on a non-enduring entity (our health) and if we can free ourselves we will be able to find joy in the present. This post sums it up neatly.  

Tenderness

One of the things, Alain writes about in book is the cult of Mary and our need as adults for tenderness from a kind mother figure. He says that across religions, there is a warm mother figure, from Isis in Ancient Egyptian times to Chinese Buddhists’ Guan Yin, due to our desire in times of need to be held and physically protected. Atheists, he writes, haven’t grasped that reverting to childlike tendancies in times when we are suffering isn’t weak. 

So what can we learn from this? To not beat ourselves up if we feel from time-to-time that we want to be looked after and that we crave tenderness. It is part of the human condition and if the people in our life won’t give it to us we should access whether they are a good fit. 

A sense of community 

Following on from the last point, if we don’t find tenderness in religion we could find it within our communities. 

In the community section of his book, Alain writes that religious building give us the ‘rare permission’ to lean over and say hello to a stranger without being thought of as predatory or insane. In the online and community meetings of people with myasthenia gravis we also can quickly speak openly and vulernably about ourselves – we have this same sense of common purpose. 

Alain writes ‘We become dull when all we seek to do is assert how well things are going for us, just as friendship has a chance to grow only when we share what we are afraid of and regret.’ I think this is something the myasthenia gravis community has already grasped so if you’re not involved already it is available if you want this level of acceptance.

Kindness

Many religions have a code of behaviour that believers should subscribe to including being kind to others. While atheists argue that freedom is the most important thing we can have – Alain argues that ‘real freedom does not have to mean being left wholly to one’s own devices; it should be compatible with being harnessed and guided’. He argues a code is needed because religions understand how hard it can be to sustain goodness and that thinking about some greater being watching makes acting nicely easier. 

So what can we learn? As a person with myasthenia, you are likely to know how it feels when someone is unkind whether intentionally or unintentionally. So try to use that experience to make sure you are being kind by default to others. Try to look past sly remarks and let go of thoughtlessness. 

Another part often built into religious codes of conduct is giving to charity or committing charitable acts. Think when you are feeling strong enough what you can do for others in the myasthenia community. A kind word can go a long way.

Letting go of anger

Alain writes about the Jewish day of atonement (Yom kipper) where you apologise for anything you have done in the last year that you feel ashamed about. It can be that you have ‘frustrated, angered, discarded casually or otherwise betrayed’ them, but your faith demands that you offer ‘fullest contrition’. 

We all know how difficult it can sometimes be to admit we were wrong or make ourselves vulnerable (‘it insults our self conception – we are in pain and at the same time offended that we can be easily so’). But by doing so, we will allow ourselves to let go of negative emotions. Part of this could be letting go of anger we feel about our condition and/or shame that we have taken out that anger on others we love. If we apologise about this, we should feel lighter.

Role models

The last section is on role models. As Alain puts it ‘Christianity recognises the extent to which our concepts of good and bad are shaped by the people we spend time with’. However, the people in our lives aren’t always a paragon of goodness and that’s why in Catholicism saints are important.

In the myasthenia gravis community, we need positive role models to help guide those who are struggling, to lift them up and give them the energy to keep fighting or the wisdom to know that this bad spell will pass. 

I hope that by using these lessons above to be a role model to the community, and I ask if you think you can be too?


73/365 -Things I’ve learned from having myasthenia gravis – part 1

While doing my daily scan of social media posts related to myasthenia gravis, I came across this article from a blogger about things she has learned since being diagnosed with MG (and other illnesses).

It made me think about lessons I have learned since my own diagnosis in September 2013. I was surprised by the amount of things that came to mind.

1. The NHS is a wonderful thing

This is probably the most ridiculous bit of personal growth I’ve done, but until you or someone you love becomes dependent on the NHS and medication it’s impossible to appreciate how lucky we are. I was brought up in a household that was very anti- taking medication and visiting health professionals – I was brought up to believe medicine should be a last resort. Because of this, I would only take medicine when it was absolutely essential and as a healthy child and young adult this was extremely rare. Pre MG adulthood, I would visit the doctors rarely, was on no medication and had only taken painkillers a couple of times – for a migraine and for a broken wrist. This  attitude made the drug experimentation very difficult for me in the beginning of my MG treatment and affects me still. But I know that no matter what lifestyle changes I make, medical treatment from experts and medication is far more powerful when it comes to giving me the quality of life I want and need. I understood just how lucky I am to have an expert consultant and to receive his treatment, along with my medication, for free when looking at moving to Ireland. You have to pay for both healthcare and medication there – I realised I couldn’t afford to live there.

2. Make the most of the good times 

Dealing with the fluctuations of the condition has been a real challenge, yet I’ve come to understand that making this most of the good times will help me through the more difficult ones. When my symptoms are reduced and my energy is high, I make sure to put a pretty dress on and go out to have some fun. I socialise and I enjoy myself knowing that it might be a while until I feel this good again. I also do a lot of exercise in these periods to make sure my muscles are as strong as possible for the low times. Saying that, I’m still trying to perfect a Buddhist lack of attachment to the way I look and feel during these good times. 

3. Don’t allow MG to become an excuse

While making the most of the good times is important, I try to stop myself from falling back on using my MG as an excuse when I don’t want to do something. I make sure that each time I do say ‘I’m just not feeling up to it as my MG’s flaring up’ that I really mean it as the last thing I want is to become the girl who cried fatigue. 

4. Learn to listen to your body

Like the above point, I’ve become more attune to my body needs during my year and a half relationship with myasthenia than I have been for the rest of my life. My mind-body relationship previously was definitely a one-sided affair but MG has helped it mature. Sometimes it’s ok to push myself but I can read the signs, mainly limbs like lead and feeling like I’ve been hit by a truck, when I need to rest. I think we still need to work on our communication – I probably should know to rest before I feel like road kill – but there has been a significant improvement. I get a lot more sleep than I used to and I make sure to have at least 2 days without exercise a week. My weekly yoga/pilates sessions are helping me stay focused on looking after my body, and I hope to deepen the connection over the coming years. 

Read part two here. 

48/365 – Being defined by myasthenia gravis

I’ve recently been informed that a small number of people with myasthenia find a couple of terms related to the condition offensive. These are: ‘myasthenic’ and ‘sufferer’. I just want to apologise about my use of these terms and any offence it may have caused.

More interestingly than ‘sufferer’ which has connotations of being a victim, the reason some people have taken offence to ‘myasthenic’ is because it makes them feel defined by the condition. Although personally I don’t mind the term, I understand the frustration. MG can take up a lot of your mental space and so it’s better not to reinforce it’s prominence in your life through language. The preferred alternative is ‘people/person with myasthenia’ – bit of a mouthful but it suggests working with the condition rather than it dominating.

Defining your identity wholly around MG is not healthy – it suggests that it is in control of your life. While the condition does fluctuate, so can be difficult to predict, it doesn’t need to be your defining characteristic. It suggests giving yourself over to your rogue immune system – it suggests passive acceptance. When people describe you, what do you want them to say? Is it simply ….. has myasthenia? Probably not.

Can being defined by MG be a positive thing?
Keeping all of the above in mind, there is a danger of going too far the other way. Many people I have spoken don’t want to ‘come out’ as having myasthenia and that is their choice. They are worried about people’s reactions, about being underestimated and how family members might feel about them being open. I get all this, but I personally feel like there’s a responsibility on me to try to raise awareness about the condition. This is difficult to do if you’re not willing to admit having it.

I’ve seen a lot of social media posts centred around the idea ‘you are more than your condition’ and of course that’s true. But this focus, to me, risks damaging the idea of community that can be really comforting (which I’ll discuss more tomorrow) and also encourages hiding rather than being proud of the struggles we endure and survive. I am definitely more than my condition but I do have to fight against the MG most days.

I’d love to get to a place where people with MG can say that they have the condition and there will be a look of recognition in the person’s face. Even a glimmer of recognition will be an improvement on most conversations we have. While the good work that charities like Myaware to raise the condition’s profile helps immensely, every time someone with MG speaks about their condition they are helping to build a future where the term ‘myasthenia gravis’ will no longer evoke blank expressions.