Diagnostics for Complex Multiple Health Symptoms
I felt a pull to write this article today, as my ongoing journey continues to flag up so many things for me. It is not designed to attack anyone, it is an observation, but also something I have been and am personally experiencing right now.
Have you spent years with an illness that compromises your quality of life? Searching the internet, trying to navigate the ocean of conflicting information? Doctors scratching their heads saying 'I don't know'?
Being prescribed medication just in case you have one of the illness labels? They don't know for sure, but "let's give it a try, see if it helps".
Thankfully I jumped off that gravy train, and refused to get sucked into that journey like so many others who have. They are in no lesser pain, and unable to stop taking them, due to withdrawal symptoms. This is not a UK issue, this is a global one.
30 years ago I began my search for help. I was physically well at that time (well I thought I was, but internally another story I know now was manifesting). My search at that time was for psychological support around behavioural eating patterns. My gut instinct told me, I am using these behaviours as a block on something unresolved, something deep within. I felt if I had help with that, it would not only benefit my immediate life and happiness, but also my future health. I had no idea back then what I know now about food, and I was right. However, I could not access the support, despite my efforts. No one 'got me'. I felt unheard.
For the last 9 years I have tried to source professional help for chronic multiple symptoms, since my fibromyalgia diagnosis, a condition I do not believe in. It is a label I feel is used when they just don't know. It is no surprise the majority of the chronic pain communities are feeling hopeless, that this is how their life is going to be forever, as that is what they are being told by those who oversee their care. If you are told something enough times, you believe it. I don't! How can that be said over something they do not understand?
I continue on this relentless search, refusing to be dependant upon medication, or allowing my symptoms/medical labels, to become my identity. For anyone living with chronic complex health issues, you will know how much effort it takes to maintain this focus.
In those early stages you need someone with the knowledge to walk alongside you, until your brain fog clears and your functioning returns. They support you, until you have the tools to empower yourself, in order to fly, continuing the journey on your own. This is what I have felt for so many years.
I have all but one of Dr Rangan Chatterjee's books here, yet I have not read one of them. Why? It is not because I am lazy, because I don't want to become well, it is simply because I am exhausted from trying to find help, and because my brain cannot absorb information.
In 2016 I watched the inspiring BBC One TV Series Doctor in the House with Dr Rangan Chatterjee. I literally cried tears with relief, excitement and hope for the future for us all, but did question how a more holistic approach was being given such prime time viewing. Clinical/holistic - the perfect approach to me! Straight away I placed myself on Rangan's waiting list as a private patient. This list has since been closed due to demand.
We met for a very short 1:1 meeting in 2018, something that I have never spoken about until now, as it was concerning an event I wanted to host and for him to be involved, which he said he was happy to do. It took me around 18 months to secure this meeting and I came away even more excited, looking forward to the time I eventually move up the waiting list and be seen by him as a patient. (Update - in 2020 notification was received Dr Chatterjee would no longer be able to see patients who had been on his waiting list. Now I deeply regret I did not have enough time to talk to him about my own health when he began to ask me. Little did I know that would be the only opportunity I would get. I was devastated to have missed that opportunity, as he felt like my last hope).
For me, diagnostics is key, simple as that. How can you treat something without knowing what you are treating? I am also equally passionate about preventative health, so we do not need diagnostics, and we will lead happier and healthier lives as we age. However, society has been consumed with auto-immune or unexplainable illnesses, and that needs to be addressed. We need to give people their quality of life back, and build upon a clean slate with preventative measures.
Complex multiple symptoms understandably, are challenging for General Practitioners. I am so lucky to have an amazing NHS GP, who has been alongside me since June 2019 following a major health crisis. We work together as a team. She has the knowledge and resources, but not the time, I have the time but not the knowledge and resources. I find information and take it to her to see if what I am presenting to her is worth exploring. It works well, UNTIL ....
You find out diagnostic testing you have read about and are excited about, some which I know were used on the Doctor in the House series, and reported on in mainstream media, are not available on the NHS, only privately. It would be unfair to say it is only this particular TV Programme I refer to. It is the same for many credible holistic health practitioners, who have a wealth of knowledge, reporting on what we need to be doing to look after our health. This is fine when you are in general good health, but not when you have complex, multiple symptoms. Much of this information is found on social media platforms, much backed up scientifically, it is all great, BUT ...
I cannot help but question how this affects the mental health of the many who have chronic complex health symptoms, who use these platforms desperately looking for answers, to then feel hope when they find something they think could help them, only to find out the tests are cost prohibitive, and they have no way to finance it.
With complex multiple health conditions, it is very apparent there are many areas to tackle, all specific areas needing specific diagnostics and treatments. It is not only about finding finance to fund one area, it is the whole piece of the jigsaw that needs to be put together. I fail to see how the majority of the general public can do this. I certainly can't.
My vision is to make affordable holistic healthcare available for all remains, and I am determined that one day, it will happen. I have an interesting podcast project coming up over the coming months, in collaboration with Crowded Productions, a media company owned by Award Winning TV Producer/Director Joe Casey, who I was lucky to meet in my campaign work. The podcast will focus on Dentistry. My 6 year dental journey has opened my eyes to so much! The connection between oral, physical and mental health needs to be acknowledged in the UK.
My acknowledgements to the individuals and companies who have or are supporting me without any fees can be found on my website on my Supporters page. I am very appreciative of their kindness.
30 years on I continue searching for answers to my health, but now have even more questions than I did at the beginning, as over the years more problems manifested. Would they have done if I had found my answers 30 years ago? Probably not.
I hope my article sparks off some food for thought. If you are on a health journey - my message to you is "Never give up hope".