Last night I posted a spontaneous story sharing how I was feeling as I go through a bad patch with my Crohns Disease. What started as a raw moment of honesty ended up with me somehow ended up going off on a tangent, stating the fact I still take medication for my Crohns Disease and I am not ashamed to say so. The replies and outpouring of people thanking me for being so honest was incredible. A couple of people told me they had fought against taking medication themselves, because it seems like a ‘goal’ to be med free and this got me thinking. What world do we live in that there is a whole tribe of people boycotting medical intervention? And not only that, there are people on social media who are willing to tell us we are wrong to take medicines, based on absolutely no scientific evidence? In fact, in response to the story I posted I received a message telling me I should try another natural remedy and if I did, I wouldn’t need medication. That literally sums up the entirety of the problem we are facing. It really has me scratching my head and feeling desperately sad and worried about the way the ‘wellness’ word is shaping how we feel about meds…
It seems bizarre to me that I even have to state that it’s okay to take medication when you have a chronic illness and when I said it on my Instagram story; I really wasn’t expecting such a reaction. Inflammatory Bowel Disease is an autoimmune, which literally means your body is attacking itself. It is completely irresponsible to think that no medical intervention for such a venomous disease is needed. This has really made me quite concerned that anyone reading or finding my story online might be lead to believe that I have ‘cured’ my Crohns through diet alone, because this is absolutely factually incorrect. I won’t recap my life story, but please do read my whole Crohns story here.
So here are the facts. I have been on medication pretty consistently and in some form since I was four years old, even since I have done my liquid diet and since I had my ileostomy reversed. I take humira injections every fortnight and I have just finished a course of mesalasine suppositories for constant bleeding (these are unpleasant, think of pills that go up instead of down!) I take Ondansetron on days when I feel so nauseous I might pass out, a drug which is used for cancer patients and I have done all of these things since I went totally gluten and dairy free, and since I upheaved my lifestyle.
So what is it about wellness and health on social media that has led us to feel like we should be ashamed of taking medication? And why have even I, at points, felt like a failure because I still have to take medication alongside my dietary and lifestyle changes, otherwise my intestine literally might disintegrate? This is such a hard question to answer but I think its two main reasons.
- We know of several hugely successful health bloggers and Instagrammers who have made their fortune based on ‘curing’ their chronic illness through diet. Whilst they may not have directly said they don’t take meds, it has lurched us towards this ideology that it is possible for us all to achieve this goal, whilst we forget that every single one of us is completely different and unique.
- We want a message that is clear and simple. I.e. – ‘you can put your IBD into remission if you’re gluten free’ or ‘if you’re vegan you won’t suffer from your psoriasis’. These claims are wildly dangerous and not evidence based BUT they are clear, and so they gain attraction. It’s the same as a punchy news headline. The message ‘I am gluten and dairy free but I also take injections, and suppositories and anti-sickness tablets and to honest sometimes I still don’t feel great’, is a less eye-catching strapline.
So where does this leave us? It leaves us angry, defensive and confused. I should say at this point that I honestly believe I have radically changed my quality of life due to making some diet changes, but has my Crohns gone? Of course not. Am I still on medication? Yes. And what happens if I stop my medication? Well, things fall apart pretty quickly. I believe diet is an absolutely integral part of dealing with a disease which manifests in the gut, but I feel angry and upset that social media has led us to a point where we feel like we can boycott medical intervention because someone slid into our DMs to tell us better.
So if you’re reading this and follow me, I really hope you know and appreciate that I enforce all dietary and lifestyle changes alongside medical advice recommended by your doctor. Sometimes of course, we make our own decisions regarding medication/surgery/treatment – but this isn’t me saying to ignore the advice of medical professionals. And if you take medication to stay on track of your life, then own it! The clear message here is that every single one of us is completely individual and unique. What works for one person, might not work for another, especially with a disease as complicated as IBD, and so we should remember that when we are flicking through social media. Anyone can say anything these days – so make sure you are getting your information from a reliable source.
Do I hope one day I might not need medication to keep me well? Of course. But I just want to live a full and healthy life – and at the moment, my meds help me do that (most of the time!)
As one of my wise followers DM’ed me ‘If diet was the answer to cure IBD, we would all be well!’