Author Archives: pharmaguapa
Well hello #Instagram!
I have been working and mentoring in social media for many, many years now and as part of that have been a very active user … of some platforms. I was a huge Facebook and Twitter fan, followed closely by Pinterest. Linkedin is Linkedin … great, functional but not really “fun”. Then there was Instagram.
Many of my friends are huge Instagram fans but I just never really got it. Instagram was just so all about “me, me, me” and selfies. You couldn’t collect and share images in the same way you can on Pinterest, so what was the point other than to blow one’s own trumpet? Now I did have an account, after all I work in social media, but just like my Snapchat account, I never used it.
Until recently. I casually started browsing Instagram and playing with the app and started coming across travel images. At the same time I also started posting more to Instagram. And so the addiction began!
Actually what I discovered was a magical world of beautiful and breathtaking images from around the world. As I sat in Zurich still nursing a broken heart I longed to get away and travel and Instagram acted as a balm for my soul as well as inspiration and hope for the future. I too would travel and see some of these places.
At the same time I also discovered the draw of checking to see if people had liked my images. The draw of likes to my Facebook posts left me long ago … but here it was again on a different platform! This does of course however support my theory of Instagram being very self-centred – here I was being all about me!
But Instagram is more than that I now see. In fact I am now also looking at it with new eyes as I wonder if I should look to move some of my charity work for Hope for Romanian Strays here. I am also providing a friend who’s just launched a new business with advice on how to grow their Instagram account, which is a learning experience in itself. Each day I discover new things and each day I learn more.
And there we have it … I have become an Instagramer and love it! Instagram provides a window to our beautiful world and turns out to be a marvelous place to roam. If you are on Instagram please pop over and follow me.
Sexy sunscreen
The other day I saw this video from Mashable about a new UV patch from L’Oreal that is meant to make applying sunscreen more fun. Essentially the patch is a stretchable skin sensor designed to monitor UV exposure and can be scanned. An accompanying app then tells you your exposure, can remind you to apply sunscreen and also uses AR to bring a little character to life (that’s the fun bit I presume).
This video reminded me of a meeting I had many years ago when I was working agency side. A cancer charity had approached us to discuss an app idea to try to encourage people to use sunscreen. Their idea was not disimilar to this concept from L’Oreal (minus the cool patch and AR) – they wanted to develop an app that would inform sunbathers of the UV levels and thereby get them to apply sunscreen.
The only problem was their target audience was young men and they did not understand their customer. They had presumed that knowing the UV levels, and subsequent danger and risks of skin cancer, that these young people would automatically apply sunscreen. They were aghast when I, a sun worshiper, flipped it round and told them that this data could be taken to be when the best time would be to get the maximum tan. I also challenged them that this app would never be used by an 18 year old on his first trip to Ibiza – unless his mum downloaded it for him and kept nagging him.
We then brainstormed around what it would take to get said 18 year old to apply sunscreen. Warnings of skin cancer and health certainly were not going to work. I came up with a very novel idea – partner with the big clubs and use sexy models. The concept was simple – have sexy models roaming the beach with sunscreen and get the guys to take photos and submit them to an online space. The clubs could co-sponsor and thereby get some extra positive publicity. The 18 year olds would learn about sunscreen from someone other than their mum and would, for that day at least, be safe – and hopefully thanks to the models sunscreen might become sexier. The photos would generate content and hopefully also buzz and with some careful promotion and PR had the potential to become a viral campaign.
Of course this idea never took – it was far to riskee for healthcare at the time and certainly for the conservative team from the charity. This was of course a shame but it also speaks to a broader issue – namely really understanding your customers and taking risks, two things pharma is not always particularly good at. There have been so many brilliant ideas, that would have benefited patients and would no doubt have been highly successful, but that die because the marketing teams involved are risk averse and conservative. It is also this issue that has led to pharma’s dominance in healthcare being slowly eroded by risk taking, modern organisations like Apple and Google. Until we can instill that same culture within the industry Pharma risks falling behind and not optimising all the opportunities that today’s cultural shifts and technology present.
The era of digital nomads
In December one of my main client contracts will come to an end and as such I have been slowly starting to think about what I will do next year. Much as I love living in Zurich it is a very expensive place to be based without a permanent job so I am toying with the idea of moving somewhere cheaper. Having also just had my heartbroken by a Swiss chap I am also less happy here than I was and contemplating a move.
Traditionally people would move based on where their job is and for many the first move abroad is the result of a job offer. This was true for me too – the first time I moved abroad as an adult was an office transfer from the McKinsey London office to their Zurich office. Since then I have become a veritable frequent mover and have lived in Switzerland 5 times, Spain twice, Denmark once and London twice. Most of the moves have been work related but not all, and not all by choice. Some would say I’ve had my fair share of bad luck with work – redundancy, the brand I was working on failing in PhIII, interview & reality not matching up, etc. – but I like to think of it as good luck. It is thanks to my luck that I have had this truly interesting career, with a breadth of highly relevant experience, with multiple organisations and in multiple countries.
It is thanks to this experience that I am also able to seriously consider not only what my next job will be but also seriously think about where I want to work. Unlike when I started my career, today, thanks to the blend of my experience, area of expertise and technology, I can contemplate moving anywhere in the world. I no longer need a fixed office or a permanent 9 – 5 job or even be based in the same country as my work / client. I can seriously consider becoming one of a growing number of digital nomads.
This freedom and flexibility is behind the growing number of people becoming digital nomads. Many of them are millennials not yet ready to settle down and wanting to travel the world but there is a growing number of seasoned professionals, like myself, who place increasing value on this freedom and flexibility. Whilst many of the jobs these digital nomads do are as developers or content creators, and not always particularly senior, times are changing. One of the roles I do for example, reverse mentoring, I can do extremely well remotely (in fact it is sometimes easier to share a screen remotely rather than squish around a physical screen in a room together) – all I need is good wifi. For other work that requires me to be face to face it is generally easy enough to hop on a flight. In fact it may even be cheaper for clients to have me working as a digital nomad, and pay for the long haul flight, simply because I can charge less per diem if I am based somewhere like Thailand as opposed to Switzerland.
Whilst being based near a beach does sound wonderfully rosy it is not without its drawbacks. I am actually quite a settled, homey person, and would never have chosen to move jobs or countries this often by choice. However this is the deck that I was dealt and I now also realise that life is short and that home is where you make it. It is also thanks to my autoimmune disease that I have learned to truly value my quality of life.
Whilst I do not see myself being an endless digital nomad at this point in my life I feel it may be a good move for me. I am still young and healthy enough to do this. There is still much of the world I want to explore and new skills I want to learn (like free-diving) but I do not have the resources, or inclination, to take a gap year and just travel. I would like to continue working but travel – the classic digital nomad. Who knows where I will end up – ideally with a permanent job somewhere near a beach 🙂 – but I feel ready for a new chapter in my life and a new journey. And so I am starting to explore my options as a digital native, and in the process replacing the hopes and dreams I had with my ex with new hopes and dreams, and in doing so help my heart heal.
Facebook campaign versus page
I recently had a conversation with a friend about what good looks like in social media, driven by a positive article about Allergan’s US Restasis Facebook page. The article talks about the Restasis brand’s foray into social media through this page and what great results it drove.
Naturally I went to have a look at the page but must admit that I do not agree with the article’s rosy glow. Yes it may have had good results at the time but closer inspection reveals some serious flaws in the brand strategy regarding their approach to social media.
The most glaring issue is that this is not a page but a campaign. Looking at activity on the page it is clearly time framed around six months. Since January this year there has been next to no activity. The brand has gone from posting regular content, driving traffic to their savings programme or other relevant material, to posting only three posts since January 2017. The content on the page is very clearly targeted and clearly driven by customer need, i.e. issues around how to pay for treatment, and for the most part drives to the brand website. Within the six month period the team have done a good job at responding to and answering questions, which gets a big thumbs up and demonstrates the understanding that this is a two way engagement channel.
However the strong campaign focus coupled with the lack of recent content really flags this as a lost opportunity to me. Rather than build a whole page, with a key purpose to apparently drive patients to the Restasis brand website, my recommendation would have been to focus activity and investment in promotion. By this I mean the focus should just have been on placing targeted adverts, including on Facebook, to drive that traffic. Building up a whole page simply for a six month campaign, rather than a concerted effort at driving long term engagement and value, is a wasted effort. It also brings with it additional risk and work due to the need to monitor 24 / 7.
Another recommendation I would have would be to focus on building up and improving the corporate Facebook presence, which is currently lacking and confusing. As a first step I would close the unofficial Facebook page which seems to be more of an employee forum but includes people replying to patient questions and issues. Now I have no idea of those people replying are authorised to do so but I would not be surprised is they are not. This is of course a huge risk to organisation but could be turned into an opportunity. There are clearly people passionate about the organisation prepared to engage on behalf of the organisation – these people could be trained and used to support the official activities.
For that to happen though there needs to be official activities! There is no official, professional corporate Facebook page, just some brand pages, and in this day and age I find this somewhat dated. By having a strong corporate Facebook page it would also provide the opportunity for brands, like Restasis, to have somewhere to post content (which can be geo-targeted to handle regulatory issues). It would also formalise and help control the discussions that are already happening – by not having a presence it does not mean that people are not talking to and about you.
To me this Restasis Facebook page, and Allergan’s approach to Facebook, is suboptimal and the sort of activity I would have expected from Pharma a few years back. Today however the approach to social media really needs to be more strategic, serious and based on a solid understanding on the value, uses and impact of the various platforms to both customers and the business. Today social media is a mainstream channel that can provide high value to both customers and the business and needs to be handled as such, and not as an “experiment” or “foray”. Embrace it, optimise it and reap the benefits.
The value of respecting your customers … in pharma
My last post was all about the value of respecting your customers, particularly if you are an airline, and was based upon my terrible experience with Turkish Airlines. To complete that article I should add that my experience with Turkish Airlines continued to be bad including during the flight with some of the most inedible food I’ve ever attempted to eat, old airplanes with seats that did not recline properly and grumpy crew. My holiday itself however was awesome 🙂
As I looked back at this article though I thought it also worthwhile to add my opinion on respecting your customers in the pharmaceutical industry. For too long this industry has been very self-centered and not particularly focused on customers, especially patients (who I also include as customers). Of course the industry is “plagued” by regulation which has made it harder to be as customer centric per se as many other industries. We all know by now that the end of the blockbuster era and the patent cliff ushered in huge change and a shift in thinking for the industry but we are still not where we should be.
So why are we still not as customer centric as we could be? Regulation is often one of the first reasons bandied about for this … “we can’t talk directly to our patients” or “we can’t do that because of regulatory restrictions”. Very often this is however just an excuse. We can still be customer centric and comply with regulations. For starters many patients do not want to hear promotional messages about pharma products anyway so even if we could bombard them with product branded marketing this would still be pharma and not customer centric.
Even where we can do promotion for it to be most effective it should be targeted and try to provide some value to the customer. What is it that a physician needs or wants to hear about? If we develop content – promotional or not – with the customer in mind then we generally see far greater results than if we just stubbornly try to force our message down their throats.
Coming back to the regulatory side of things though I do also believe that it is time regulators also become more customer centric, particularly towards patients. Whist I do not support a US style DTC promotion I also believe that the pharma industry sits on a large swathe of data that would be highly valuable and beneficial to patients, and HCPs. Much of this data is never made available to patients – in part because of compliance but also in part because of the “fear” of regulation and legal action. Counter this with the number of misinformation that patients now have access to online I think there needs to be a change in thinking in how we communicate and share information online. I firmly believe that as an industry (both pharma & regulators) we have a duty of care to make sure that patients have access to accurate, reliable information. We need to drown out the misinformation, and make sure that the correct information is coming in at the top of Google searches, and not hidden away a few pages in.
A second issue is that whilst many patients may never want to know the data, or indeed even understand it, there is a growing number of active and educated patients that do want more information. The informed patient wants to have the data so that they can make their own decisions concerning their healthcare. The days when we as patients blindly trusted what our doctors told us are diminishing. As a patient who has experienced misinformation coming from a specialist, in my case an endocrinologist who told me that the symptoms form my un-managed Hashimoto’s were all in my head, I firmly believe in the movement of the informed patient and the need for patients to be more active in their healthcare. Had I relied on that endocrinologist, and not actively sought my own answers, I doubt I would be here now writing this post as I would probably have either been too depressed or died of heart complications due to over-medication in an attempt to reduce my symptoms.
I think it is high time that all those involved in the healthcare system start to respect patients as decision makers and work together to support the informed patient. How can we make all that data that pharma sits on, that may have no commercial value to the organisation btw, available in a digestible and understandable format for patients. Pharma often has the money and resources to turn the data into content and disseminate it but may not be allowed to – or may not have the incentive to. Much of that data may also have a public health benefit so one could also argue that pharma should not shoulder the burden of dissemination alone. Pharma companies at the end of the day are businesses and if they are not profitable they will go under and that also does not benefit patients.
There are many more questions but there also numerous answers. For starters pharma can start to work more closely with patient associations. Why is it that for many pharma companies the patient advocacy department, if there even is one, is only made up of one or two people?! Whilst we have huge brand teams focused on marketing to HCPs the number of headcount that is focused on patients is tiny by comparison. Pharma really needs to start ramping up in this area.
In turn though regulators may also need to re-assess that pharma patient partnership model. Not all diseases have a patient association but there may be online groups and individual patient experts. How was can facilitate partnerships here for the benefit of all parties? How can we all work together to find a model that supports patients, is compliant but also does not bankrupt pharma? I think the answer lies in the question … we need to all work together! We need to start talking more to patients, and include regulators in those discussions. We need to put patients firmly in the center of the equation, along with HCPs. We need to not only start listening more but also start being more active in driving the change needed to do this. Only then will we start to see an industry that is truly respecting its customers and meeting their needs.
The value of respecting your customers
The news is currently awash with a spectacular example of a company failing to have any respect for its customers. When #United decided to have a paying passenger dragged off one its planes to accommodate employees, whom the airline felt had more right to be at work the next day than said customer, they showed a total disrespect for their customers. The incident, and the initial response of the CEO, also showed a total lack of respect, and understanding, for the power of the citizen journalist and social media.
The fact that other customers filmed the shocking incident and shared it online really should not have come as a surprise, nor should the fact that it got picked up by the media and went viral. The days of being able to just bury incidents under the carpet are gone. Whilst not all examples of bad customer service go viral it is now a real danger for any company, and as such all companies need to start being much more vigilant to customer complaints, especially when these are posted to a social media network.
The other factor here is also basic marketing. When I did my Masters in marketing one of the things we learnt was people talk more about a negative experience than a bad one. It is also accepted business wisdom that happy customers are more profitable for companies – they spend more and it is cheaper to retain them than it is to gain new customers. The other thing we learnt was that a company can turn a customer with a negative experience into a loyal customer by the way they handle a complaint. It is all about making the customer feel valued.
I have numerous personal examples that support these facts. In fact my motivation for this blog post is not the United incident but my current debacle with Turkish Airlines. Right now I am an extremely unhappy customer and have been appalled at their dreadful customer service. As a frequent flyer with airlines like British Airways I have come to expect a certain degree of customer service from reputable airlines and I had been under the impression that Turkish Airlines also fell into that category but clearly not.
The issue in question was entirely my own fault but highlights the difference between an airline like British Airways and Turkish Airlines. I recently booked my holiday to the Philippines but to my horror a couple of hours after paying for the flight I realised that I had booked the wrong dates (due to still being under the weather with my Hashimoto’s btw). I called Turkish Airlines up immediately to try to find a solution to this. I was greeted with an unfriendly and unhelpful rep who refused to help in anyway. This is entirely at the discretion of the airline as I know that British Airways in these situations give you a grace period of 24 hours in case this happens. Not Turkish.
Very distraught I wracked my brain for what to do as I now faced spending less than 5 full days on the beach for 3 and bit days of travel! I then phoned them back to ask about buying a single ticket out on my original planned date and then using my return ticket as planned. Again I spoke to a less than friendly and unhelpful customer service rep who informed my that this was also not an option. I would have thought Turkish Airlines should have jumped at the option of selling me a second ticket, especially as I am sure the currently climate and laptop restrictions on flights will be impacting their sales. I then complained via Twitter and got a much more friendly and helpful response – they lodged my issue as a complaint with customer services for me. Yay!
But no. I got an email from the customer complaints department that it would now take them around 7 days to get back to me! In 7 days time I had hoped to be in a flight and also needed to organise my accommodation! Why on earth would it take them that long to contact me?! To this day I have still not had a response from them, despite numerous follow up tweets. A swift response would have placated me, even if only to sell me that single ticket, but now days of silence later I am a very irate customer who is telling everyone I know, including some very frequent travelers who fly with Turkish (sorry … who used to fly with Turkish). The window for Turkish Airlines to retain me and my friends as customers is rapidly closing – if they do not want my money I am sure many other airlines do.
This experience contrasts with my other recent travel experience, namely with the Radisson Hotel in Austin. There I also complained about a few issues I had had at the hotel. Their response however was very prompt, courteous and professional. When I complained I really felt like I would never stay in a Radisson again but following their fantastic customer service they have managed to flip the situation and turned me into a loyal customer. I now know that if I ever have issues again I can trust this hotel to resolve them in a positive manner and as a result I will have no issue in picking the hotel over another hotel on my next trip.
I am generally a very loyal customer (last year paying close to £1000 more just to fly with British Airways) and I, like many other customers, am actually quite easy to please. Listen to me, respond to my contact request and treat me like a valued customer who you would like to retain. It is my money to spend and I can easily spend it with another company. Keep me happy, like British Airways always does, and I will tell people about my great experience and keep coming back. Make me unhappy, especially by treating me like you have no interest in my future spend with you, and I will tell everyone I know and take my money elsewhere.
Whilst a single customer may not per se be of interest to the company, their friends, family and extended network may be. As word of mouth spreads across that network, as is the case for United Airlines, you start to see a real impact on revenues. Counter that with the cost of good, courteous and helpful customer service, it just makes good business sense to treat your customers with respect – each and everyone of them.
Addendum
Within an hour of writing this post I received the following response from Turkish. I have no idea why it took them days to provide a standard response like this. It also does not address some of my issues that I complained about. You can see my response below too. Clearly I will not be flying with Turkish Airlines again and I will continue to advocate against flying with them. If you have had similar negative experiences with them I would love to hear about them too.
J&J strikes gold … and ignores it
So I was meant to write a summary of SXSW but I wanted to write about a post I saw today on J&J’s Facebook about autoimmune diseases (and in case you can’t be bothered to scroll through Facebook here the post on the J&J blog). There were a couple of things that struck me.
First the volume of engagement the post caused. It was not just a few standalone comments but people were in active discussion with each other. I have rarely seen that level of open, heartfelt conversation around a pharma post. The discussion also really resonated with me, as an autoimmune patient. The post was sharing the story of three autoimmune patients who overcame the struggles of their disease to get their lives back on track. Of course the thing that helped them all was pharmaceutical products and whilst no brand names were mentioned it is not a huge stretch of the imagination to realise they were talking about J&J products.
Whilst a few people were positive about the post, and how inspiring it was to see patients fight their disease and be able to overcome it and lead a relatively normal life, others had a very different point of view. What they pointed out that actually many patients do not have the option of “overcoming” their disease and leading a normal life. For many patients with an autoimmune disease there is no adequate treatment and daily life is a constant struggle.
In fact one lady pointed out that these types of articles actually can have an adverse effect on patients as friends and family share them to show that other patients have managed … so why can’t you? It can help foster the issue that many patients have were friends and family just do not get the struggle and perceive the disease to be something you can “get over” or something that is more in a patients head than being really that bad.
As an autoimmune patient myself I can tell you that despite medication (and I am 100% compliant btw) things do put me off kilter (like gluten). When I am off kilter I can feel absolutely bloody awful. It is not in my head – it is very real. In fact since my last post, where I spoke about my brain fog and fatigue, I’ve had to experience one of the other nasty glitches this disease causes – emotional “trauma”. I call it trauma because it is very upsetting. I have always been good at controlling my emotions and generally am a very level headed, laid back person but when my Hashimoto’s rears its ugly head my emotions can get all crazy. I would liken it to the emotional turmoil some women go through during their periods. One minute I’m fine and then next I’m bursting into tears. I become over-sensitive and the slightest thing can set me off and become a huge issue. The impact this can then have is that my over-reaction upsets me and makes me even more upset, spiralling down into an ever darker vortex. It can take days for me to be okay after this and can lead to my depression re-appearing.
I am fortunate that I know myself well enough, and have battled depression on and off over the years (thank you Hashi’s!) that I have some great coping mechanisms (and some awesome friends who I can talk to). Yesterday I was blubbing my eyes out, feeling like there was a raw gaping hole in my chest, today thanks to some of these coping mechanisms it is more like a small sore. Tomorrow I will still be fragile but hopefully with care and self-patience in a few days this will all be just a bad memory and I will have my life back. I am also fortunate that I have a job I love because it also really helps to just focus on my work and bury my head in that rather than dwell on the rollercoaster of emotions that is waging its own little war in my body.
And so I come onto my second point about the J&J post. With all of this engagement happening as I went through all the posts there was one glaring omission. There was absolutely no response from J&J! What a wasted opportunity to really engage in a meaningful dialogue with your customers (and yes your patients are also your customers – not just HCPs). Where was even the “thank you for your comments” type of response? Nothing. A classic pharma one directional post – a “here you go enjoy but we don’t want to talk to you” attitude. As an autoimmune patient I really welcome that J&J is sharing posts on this disease area, which gets so much less spotlight than cancer or heart disease, and yet impacts just as many, if not more, people. I would have liked to thank J&J for the post and the subsequent discussion and would have valued their input into the dialogue.
Yes we are talking about patients where J&J medications have not had this same positive impact but what a great opportunity to show that you still care – and perhaps if relevant to point out how much money you are investing into R&D in this area. It is also a fantastic opportunity to engage with patients and learn some valuable insights, which in turn could help generate even more engaging content. I could imagine this would make for a great tweetchat or other posts pulling out some of the issues highlighted in the discussion. Having worked for pharma brands I know the constant struggle to find that golden content that resonates and works. Here it is being handed to J&J on a platter.
J&J you hit gold with your post but rather than mine that gold, and share its riches, you have just let it lie and fade.
Oh and by the way one of the patients in the post also joined the conversation … making J&J’s absence all the more glaring. Hats off to the said patient – for sharing her story but also for the compassion, and openness with which she joined the discussion.
When a restaurant ignores your gluten allergy
I am very open about the fact that I have an autoimmune disease, Hashimoto’s, and I try to do my bit to help educate others about this disease, and other autoimmune diseases. I feel as an educated patient, who works in digital health, I am well placed to do so and to a degree feel like I have a duty to do so.
Sadly one of the common problems for Hashimoto’s patients is a sensitivity to gluten, and I am no exception. Prior to becoming ill I used to poo-poo people who said they were allergic to gluten, putting it down to a health fad. Then, a few years ago, I became very ill, despite taking medication for my diagnosed hypothyroidism. I had put on over 15kg in a very short period of time, had very bad depression, fatigue, brain fog etc. I had been diligent in taking my daily medication but despite this these symptoms worsened. It was only after a visit to an endocrinologist in the UK, who diagnosed my Hashimoto’s, and some online research that I started making some lifestyle changes.
One of those changes was removing gluten from my diet. I love gluten and removing it from my diet has been one of the hardest things, and to do this day I wish I could eat gluten. Howeve
r I have learnt that if I do eat gluten the above symptoms return and I feel terrible. It can make eating out in restaurants hard but increasingly I find restaurants are understanding and accommodating of my food allergy. Even in Sri Lanka they were aware of what a gluten allergy is and went out of their way to make sure no gluten made its way into my food. In the US I had f
ound there was traditionally a higher awareness than in countries like Sri Lanka, and so I always had confidence in the waiting staff in restaurants there.
This was clearly an mistake. The other week I was over in Austin at SXSW (and yes I must blog about that too!) and had dinner at what used to be my favourite sushi restaurant there, Ra’s Sushi. I had a long discussion with the waitress about my allergy and she was great in trying to suggest options for me off the menu. I opted for a crazy monkey roll minus the tempura and she brought it with the eel sauce on the side flagging that the sauce may have gluten in it (so I did not eat that). The roll did come however with a lovely mango sauce which I did eat (it part of the dish and not served in a separate bowl).
What then followed was what I initially put down to be an extra severe hangover (this was SXSW afterall!) but by day 2 I still felt pretty out of it and not well. Must have been something I drank I mulled. I then went back to Ra’s for lunch and ordered the same thing but this time it came without the mango sauce. When I asked about this the waitress informed me that the mango sauce had gluten in it! As you can imagine I was royally p***** off by this and all of sudden realised why I was feeling so rough! How could they have been so callous with my health despite my very clear and careful flagging of my food allergy?! This is not some random, obscure allergy either, but one that many autoimmune patients suffer from.
Now a week and a half later I am still ill as a result and I feel it my duty to write about this to try to make people aware that a gluten allergy is not some “fad”. It is not something I choose not to eat. Nor is it all in my head. Gluten has a very real impact on my physical health and well being – and believe me I really wish it did not. I would love to eat bread or pasta or random sauces like a “normal” person. But I can’t. And a restaurant should take my, and other’s, food allergies very seriously. I am “lucky” in that I can still function – to the degree that today at work someone commented on how well I was looking. Great.
Let me describe to you what it feels like when I eat gluten – and why even if I look great I am actually feeling incredibly rough. Firstly there is the fatigue. Autoimmune fatigue is hard to explain unless you have actually experienced it. It is more than tired. I ache. I feel like I have not slept properly in days, and that I have a huge hangover and the flu all rolled into one. I feel like I have been doing extreme physical exercise or been on some extreme sporting event for days. Trust me I haven’t! Despite my over 10 hours of sleep I am exhausted – and I have had a fairly easy day with next to no mental or physical exertion. In fact I have had some awesome, fun meetings today – I should feel energized and reinvigorated. But no – I just feel like I have a really bad flu – I am shattered, I ache and my neck area (where my thyroid is) feels particularly sore and sensitive. Despite this I also know that I may have trouble sleeping properly – one of the great paradoxes of Hashimoto’s fatigue + sleep disturbance. Awesome combination.
That unfortunately is not the end of it. The other major symptom is brain fog. Just as autoimmune fatigue is hard to understand and describe so too is brain fog. Again I will liken it to a hangover – when you just cannot think straight – but far worse. I have next to no memory right now and have to write everything down on post-its. I struggle to clearly remember the bulk of some of my meetings – only the gist. I am struggling with people’s names (although I have never been good with names).
Brain fog however is more than just memory – it is also means I cannot think as clearly. For a split second today for example I could not remember how to look at the next week on my calendar. Basic and yet for a split second I drew a blank. I am extremely fortunate that I am highly intelligent and can compensate for my brain fog – as one of my colleagues generously mentioned today I was just a “normal” person and not my normal bright, on the ball, intelligent self. She said that she would never have guessed the difficulty I was having intellectually. I still got all my work done – but it was hard work and I was painfully aware of the gaps in my cerebral capabilities. Again I am fortunate but my years of experience also means I can cope and still deliver great work despite my brain fog but what about those with less experience? How would they cope?
This then brings me to my final point. Many of us autoimmune patients look fine, normal, healthy. You may never guess the battle we are going through or just how incredibly ill we feel. We have a chronic condition that we have to live with and deal with and we plod on, we persevere because we have to. Whilst on the one hand I am happy that I look great (and clearly my Karen Millen dress is hiding my gluten-related bloating well) on the other hand I do sometimes wish people could see just how ill I feel. I think if you could see how ill we patients sometimes really feel you would be in utter awe of us.
We do not want your pity though – but we do want you to try to understand. And we also want you to respect our health and our allergies and not be cavalier about it. If you are a restaurant and a customer states they have an allergy then you need to do your utmost to make sure that that is respected and if you cannot do that then be honest and open. I would rather have gone hungry than eat gluten that day and suffer the consequences for days and weeks later. Needless to say neither I or my friends will ever frequent a Ra restaurant again, and if you have a food allergy I would suggest extreme caution eating there – which is a shame as the sushi is awesome.
I might add as a final piece though that they clearly do not care as my complaint remains unanswered and ignored. Perhaps by reading this they will get a better grasp of what it means to ignore someone’s allergy and realise that as a result of their disregard for my allergy I now have to suffer and struggle through these horrible symptoms. Maybe this one post will mean that they will start to take food allergies seriously and that no other autoimmune, or other, patient will have to needless suffer as a result of one dinner out. Let’s hope!
PS. For full disclosure the sushi in the photo is one I made not one made by Ra’s sushi. And it was 100% gluten free.
#SXSW17 countdown
This time next week I will be in Austin Texas enjoying day 2 of SXSW. If previous years are anything to go by I will be having an amazing time, but may be sporting a mild hangover. My first year at SXSW was a real life changing experience but sadly my second year, last year, was far less outstanding. I still enjoyed last year but it lacked the “wow” of my first time. I suppose though this is to be expected as with all things in life!
This year I am hoping to land somewhere in between. Of course I am not expecting that same “wow” that I experienced the first time – the element of the unknown and surprise is gone – but I am hoping that this year I will be a bit more prepared than last year. I have also been looking at the programme and I am already more inspired than I was last year. I had struggled at SXSW16 to find things that really got me excited, with a few exceptions, but this year’s programme looks like there will be plenty to get me stimulated (besides all the parties and free booze of course!).
I am also really chuffed as this year I have an old friend my MBA attending along with a couple of my London friends so I have high hopes on the social side if nothing else.
This year I also have a clear objective – to gather as many freebies as possible! In April I will be heading back out to Africa to join my boyfriend for the Namibia leg of his trip and I plan on restocking him with pens and other stuff that he can give away to kids as he travels through the continent. It really struck me in Morocco that all the children just wanted pens – that was the first thing they asked for – followed by “bon bons” (sweets) and interestingly enough then following by “cahiers” (notebook). SXSW will provide me with the opportunity to gather up freebies and put them to good use. Rather than those free pens just lying around at the bottom of my handbag they will hopefully be used by some child in Africa in school. Of course I will be on the look out for more than just pens – I will gladly swipe sunglasses, toys, etc. Perhaps not the most digitally orientated objective but I a good objective nonetheless in my mind.
So if you are going to be at SXSW17 and want to ply me with free goodies just get in touch!
The Sahara
This weekend I had the pleasure of doing a long weekend in Morocco with my boyfriend. He is driving down from Zurich to Cape Town and back in his Landrover and I flew over to join him for this part of his trip. It was truly spectacular from the picturesque Riads in Marrakesh, through the snow capped Atlas mountains, to the sand dunes of the Sahara and the vast expanse of stony dessert and nothingness on its edge. Being in a Landrover meant we could get to places not many tourists get to visit and we also were able to camp out in the dessert, whilst being totally self-sufficient (his car is even equipped with a travel shower, solar panels and a proper fridge). I am truly fortunate that I was able to have an amazing experience like this and I had the most fantastic time … despite being offline for most of the time.
In this day and age to be somewhere were you truly have no internet connection, no wifi, no roaming, is remarkable. It felt as if time had stopped and there was only the here and now – with all its beauty. Of course I really wanted to share the wonder of my trip but at the same time I had no desire to connect to the outside world – to find out what new craziness was happening in the USA or what new issue was hitting the NHS. It really made the trip that much more magical being so cut off and it is an experience that I would not have valued perhaps quite as highly until I had gone through it. I always joke that I couldn’t live without Facebook but I survived 5 days without it!
The only time I went online was briefly to email my parents. They were naturally worried about their daughter going off road with some chap (they have not met my young beau yet) in a North African country and I wanted to let them know that all was good. I therefore switched on roaming as we stopped in one of the towns and sent them an email. This however is in itself remarkable because, just as I was connecting from the middle of nowhere in Morocco, they were picking up my email in the middle of the ocean somewhere off the coast of Hong Kong (they are on a cruise). It was comforting to know that I could let them know all was good – and I am sure it was comforting for them to hear that all was good my end too. Even in the remoteness technology enables us to connect with those that mean the most to us.
Of course I do have to admit that the first thing I did once I had been dropped off at the airport was connect to the Wifi and check the Beeb and Facebook (and send my parents another email this time with some photos). I discovered that actually the world had not ended while I was away and that I really had not missed much on Facebook. Oh what a surprise! What had happened though was that Whatsapp had changed – when I went to post a status update (something mooshy along the lines of being in love … ahhhh) I discovered that I could no longer do this the normal way but now there was a status tab but it only allows for photo updates not text. Change is not always good in my opinion!
Now that I am back home of course I am also incredibly grateful for technology. I will not be seeing my boyfriend for another month or so, when I will go join him in Namibia for a few weeks. Naturally I miss him like crazy but we can stay connected through Whatsapp and “old fashioned” text messages. He is also using a very cool tech device that posts his co-ordinates so I can also always see where he is and I am also comforted in knowing that the same device has an SOS function which will ensure help is sent to him wherever he is if he needs it. So whilst he is literally miles and miles away technology will ensure that we can stay close and connected and that is truly magical.
