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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.

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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.

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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.

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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.

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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.

 

 

 

 

 

 

 

 

 

 

All I wanted for Christmas …

This time of year is often a time of reflection.  It is a time of thinking about what you really want for Christmas – what items go on that famous Christmas list.  What are the things you would really love Santa to bring you – and being Santa you can wish for whatever you want.

This year there were some practical things on my list – including an electric blanket  and a pasta making machine (both of which I got – yay!).  There were also though some wishes and hopes on the list.  I have one wish every year and that is for donations and miracles for the dogs in the Bucov shelter that I support through Hope for Romanian Strays.  With now over 1500 stray dogs living in the shelter (with an original capacity for 700 dogs) and of those over 300 puppies, there is never enough funds to help them all.  The authorities do not provide enough food for that many dogs so it is up to us, and our supporters, to provide the additional food and care to try to keep the dogs alive.  There are constant medical and emergency cases, like newly born puppies or injured dogs dumped at the shelter gates – essentially being left there to die.  My wish did partly come true as thanks to some generous supporters and fundraising the dogs did get a Christmas meal.  This is of course a drop in the ocean but at least they did not go hungry on that special day.

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Puppies in the Bucov shelter getting their Christmas meal

My other Christmas wish this year relates to work.  Having left ZS in March I have gone back to working as a freelance consultant, culminating in an extremely busy December.  However with my contract coming to an end in January I am again looking for the next opportunity.  Whilst I would love the stability of a permanent job, the reality is there are not that many permanent roles for someone with my level of expertise and seniority.  I also have such a huge passion (and depth of experience) for my area of specialisation (healthcare digital and social media strategy) that I have no desire to even consider anything else (except perhaps animal rescue!).    I do also love the flexibility that working as a freelance brings and so I am putting feelers out again for some more contract work.  As always it is a balancing act between finding new opportunities and meeting the requirements for the current contract – and this is one of the down sides of freelance work.  I will have to start looking for the next opportunity whilst working flat out on the current contract – and find time to rescue dogs and take care of my health and personal life. I’m tired already just thinking about it!  And so I make my wish and I hope that one of my tweets or posts ends up fortuously in front of the right person at the right time and I end up with a new contract for 2016.  Fingers crossed ….

Linked to the above wish is another work related wish – a new laptop in the shape of the new Mircosoft Surface Pro.  Sadly this is not a wish that Santa was able to grant this Christmas because Microsoft decided that Europeans are second class citizens compared to the US and that we have to wait 6 months to get our hands on this new shiny gem.  My wish will have to continue being a wish only until March when I hear the Surface Pro will finally go on sale in the UK.  Annoying.

My final big Christmas wish of course has to be health related.  If you follow my posts then you know I have an autoimmune disorder called Hashimoto’s.  I think most patients with autoimmune disorders wish for improved (or at least stable) health.  When I am happy and love what I am doing (and get plenty of sleep, eat well, etc.) I have no issues whatsoever with my condition.  Sadly if I get over-stressed, sleep badly, or slip up on my food (e.g. eat something with Gluten in) I end up feeling pretty pants.  Of course I plod on but there will always be a wish for that magic pill to come along and make life easier – or indeed cure my condition.  That will stay a wish for a long time though as that is unlikely to happen!  My other, more realistic, wish therefore is that more people are educated about the reality of autoimmune diseases, including doctors.

I got to spend my Christmas this year with my family, including my brother who is a GP.  I was really saddened to hear that he had no idea the impact gluten (and diet in general) can have on patients with autoimmune diseases.  I am not sure if he took my gluten free diet that seriously – I suspect like many doctors he felt that just taking my pills should be remedy enough.  This makes me sad as I know the difference lifestyle makes on quality of life, and disease progression, for many patients with autoimmune diseases, but if doctors do not provide information or even support in this area then life just gets that bit harder.  There really is nothing more frustrating that having your condition dismissed by your doctor – or indeed your online research either.  Yes there is a large amount of incorrect and bad information online, but there is also a huge amount of life changing, accurate information out there.  The fact that some of this comes from patients makes it no less valuable or accurate.  Afterall how can a healthy doctor really understand what living with an autoimmune condition feels like and who are they to judge how we feel if we make lifestyle changes?  And so I wish that more doctors listen to their autoimmune patients and try to understand their needs and conditions better.  I wish more autoimmune patients had access to a great doctor like I do here in Switzerland.

If I could have my wish for a healthy 2016 and a new contract or opportunity to come true then I can also help make my first wish come true – I would be able to make a large donation to my charity and thereby rescue the lives of more vulnerable, neglected dogs in Romania.  So should you hear of any opportunities (perm or contract) then do let me know … and you can do your bit to help my wishes come true!

 

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Sahsa – one of Hope for Romanian Strays rescues guarding the Christmas food for the shelter dogs – and looking very festive in the process!

 

 

Things are not always what they seem…

Job-Seeker-0111Having recently joined the job seeker pool I was buoyed by a number of really positive articles talking about how this year is going to see an increase in recruitment as well as a skills gap and employees having more choice and higher negotiation powers.  Awesome says I!

There is then fact that I am an expert in social media in pharma, an area that is also growing and where there is a blatant need for more talent.  Many pharma companies still have no social media presence, strategy or even dedicated headcount and very few are approaching this main stream communication channel as strategically or as seriously as they should be.  This is after all now one of the main communication channels for a large chunk of healthcare stakeholders, from doctors through to patients.  This is where people turn to for health information and news and yet many pharma companies are still conspicuously absent from this space.

I was therefore very positive when I left ZS that I would soon be picking from an array of opportunities.  However things are not always as they seem!  Firstly given many pharma company’s lack of strategic approach to using this channel most of the jobs are at a very junior level – more focused on content management rather than being a strategic leader, relationship builder or internal change manager.  Secondly the very fact that many pharma still have this unfounded fear of social media they are also not looking to employ in this area.

This brings me onto my second road block – being “too experienced”.  Given the wealth, depth and uniqueness of my experience I am often too skilled, or more to the point too expensive, for the roles available. People always ask what my current salary is and then tend to go very silent and end the conversation.  No matter how much I explain that passion for my work and work life balance are more important than salary it seems to be a discussion closer (before the discussion has even begun).  That said I recently had a discussion for what sounded like a perfect role for me … until they mentioned the salary which was half my current salary, and less than I was earning over 5 years ago – I am flexible but not going to sell my experience short either.

hashimo2Things are not always what they seem then.  This also goes for other areas in life and in fact is something I have also been mulling over recently.  The other day I was walking down Bahnhoffstrasse here in Zurich and saw a very anorexic looking woman on the street.  The same day I saw some photos online of some obese women.  Prior to my own diagnosis with a thyroid condition I would always automatically have thought the anorexic women “needed to see someone about her mental problems” or that the obese person “should lay off the hamburgers”.  However things are not always what they seem.  I now appreciate that either of those groups could in fact be dealing with health issues which are having a significant impact on their weight.  As a result of my thyroid I put on close to 15kg – and I was a physically active, salad eating slim woman.

I also now know all too well that that friendly, smiling person may in fact be feeling desperately ill, depressed and miserable.  Many autoimmune patients, for example, struggle daily with the effects of their disease but put on a brave, happy face for the outside world.  They do not want to burden people with their misery or they feel people will not understand and they will lose their friends and will feel even more alone.

So I always remember now that things are not always as they seem.  That dream job may take a bit longer to find, no matter how great the market or your skills are.  That seemingly happy, or weight-challenged person may in fact be suffering from a horrible disease and may be feeling desperately alone, miserable and in pain.  This is why I try these days not to make assumptions and I always try to smile at people.  I may be going through a bad day but that person may be going through far worse.  My smile may not mean much but I hope it helps make things seem a little bit sunnier to that person.

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