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.
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!
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.
This week I was giving a lesson on the basics of social media and I noticed that Tinder was included in Fred Cavazza’s awesome social media inforgraphic. I have to admit that this surprised me – I’ve been using Tinder for years but I never thought of it as a social platform. For me Tinder fits into the online dating category, not social media.
However this image made me think – what is social media but platforms were people can engage and interact … just like online dating. The more I pondered this the more I began to see the sense of Tinder appearing on this image, especially with the new functionalities that Tinder has brought in recently.
With this new thinking I logged back into Tinder, and with my partner in crime and a few glasses of bubbly, we decided to test out the new Tinder Social. This functionality is Tinder’s attempt to take the dating app into the more “social” realm. It allows people to form groups with friends of theirs who are also on Tinder and then swipe other groups to chat with and potentially meet up with. You can only engage with these groups if you yourself are in a group – so a single profile can’t engage up with a group profile. There’s been quite a few comments about what this functionality is really for, especially given what many single people use Tinder for, and I have to admit that I was therefore not overly surprised to see a few male female groups, where it was clearly a couple looking for fun.
Anyway so there is me and my partner in crime, let’s call her Miss.B., playing with Tinder social. It was Miss B. that set up our little group and this is where I stumbled upon my first issue with Tinder social – she could add me to a group without my permission or even notifying me. I find this quite concerning – any of my friends on Tinder could use my profile and there is nothing I can do about it. I pondered how I could use one of my friends in Australia’s profiles to form my own group – knowing she would be fast asleep I could in theory have fun with groups without having to worry about her quitting my group (well not until the early hours when she woke up). I could image her waking up perplexed to find her Tinder inbox full of these group chats – how angry do you think she would be? I know I would be pretty peeved! Mark one against Tinder.
I then came across our next stumbling block with Tinder’s attempt to get more social … control. While Miss B. was happily swipping away on other groups I discovered that as she set up the group (on her iPhone) she had all the control – I was unable to swipe groups on my side (with my Android phone). This meant she could connect with whoever she wanted, using my profile, but I had no say in the matter, and again the result was a stream of discussions in my Tinder inbox that I may not have wanted to participate in. Mark two against Tinder.
My final thought around Tinder and social is how the app now pulls in information from your other social networks. To sign up to Tinder you can use your Facebook account – and Tinder now shows you common connections as you browse people’s profiles. I have to admit that I do not always like this. I am not sure that I want to know that someone I might hook up with on Tinder is also friends with my ex, for example. I have also discovered another potential issue here too as I have started getting friend and message requests through Facebook (& Instagram) from guys who have seen my profile on Tinder and rather than use the Tinder app to contact me go straight to one of these other social media networks. I’m not sure if I actually find this a bit intrusive – if I was interested in you I’d swipe right – but at the same time I’m always quick to move Tinder chats off Tinder anyway (it drains battery like there’s no tomorrow) so maybe it’s not that bad. But still a potential mark three against Tinder.
Having now played around with Tinder’s new social functionality and having looked at it from this new perspective I think I could agree to having Tinder appear in this social media image. The question for me though is whether Tinder is on the right path with these new “social” features? I have been a huge fun of Tinder for years and have been very successful with it’s basic functionality, but I am starting to feel it may be getting a bit intrusive, as it leaches into my other social platforms. Maybe it is time to find a more anonymous dating app? Especially given the potential intrusion of Tinder Social where I have no control over whether someone uses my profile or not. Or maybe I’m just being a bit bah humbug because Miss B. got to enjoy all the fun of Tinder Social while I just watched helpless as she swiped some dodgy looking guys, and then found my phone constantly vibrating with these said groups trying to chat with me. Either way whilst Tinder could be considered a social media app they also need to tread carefully as they are walking a fine line between being social and being intrusive. What do you think?
Over the years I have often been asked what good looks like when it comes to digital in pharma. I have been asked for benchmarks and examples from other pharma. Who does digital best is another popular question. My answer to this is there is no single answer. There is no single pharma company that stands out across the board in digital. There are some that have done great apps but have terrible websites, or have done great apps but failed on social media.
So when I am asked what good looks like I tend to reply – what do you think? As a pharma company whether you are targeting HCPs or patients it is important to remember that these stakeholders are people – just like you and me. Sometimes the way I see pharma talking about HCPs it is as if they are a separate species, a species that does not use Amazon or Tripadvisor, or any other online services. Our stakeholders are however people like you are me, and like you and me they use online services for everything from shopping to banking.
That is why when I am asked what good looks like I ask my clients to think about their own use of digital. What is that they like about Amazon? What do they hate? What are their own online behaviours? Whilst where we shop and go for news online varies country to country basic behaviours and expectations are very similar. No one likes pop up ads or pages that take forever to load. No one enjoys clicking multiple times trying to find basic information. In this day and age we all have certain expectations when it comes to digital, and we expect to be able to access information quickly and easily. Why should we not expect the same basics from pharma? Why should we are users have to battle to get to the information we are looking for? Will we keep trying or just go somewhere else?
I don’t know about you but I know if a website, or other digital tool, does not give me what I want, and quickly, I will go elsewhere. I am fairly certain the same rings true for pharma customers too. Therefore when someone asks what good looks like – the answer is already there in our own day to day behaviours and expectations. Don’t you think?
The time is rapidly approaching when tickets for SXSW 2017 go on sale. This means the time is rapidly approaching that I need to make the decision – do I go again next year, for my third time, or not.
I went to SXSW for the first time in 2015 (you can read my posts about this trip here) and it was one of the most amazing experiences. In fact it had such a great impact on me that I quit my job to go back to focusing on digital and social media strategy. It was therefore natural that the minute tickets for SXSW 2016 went on sale I bought one and booked my hotel. I had to go back for more!
As is often the case though that first, amazing, experience was not replicated the second time round. I think this was in part as it did not have that first-time “wow” – this time I knew what to expect and that first year I saw some truly inspirational things. That is not to say I did not enjoy SXSW this year but I am not sure it was worth what I ended up paying for it (I left buying flights until the last minute which was a costly mistake and I opted to stay in a very nice expensive hotel). Then again I did come back with my Galaxy Gear VR headset which is totally cool!
So let’s see. I still have a few days to ponder on this.