Category Archives: hashimoto’s
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.
