As many of you here know, I am a registered nutritionist (BSc, MSc) – for over ten years I have kept up to date reading the scientific literature daily, attending conferences, taking expensive courses and making sure that I am fully aware of what is going on in the scientific nutrition community.
For the last 6 months I have read over 300 papers and written a 57 page review paper on the evidence for diet and lifestyle changes to help lupus sufferers. I have not been paid in this time, passion has been my drive and I have lived off my hard-earned savings. I wanted to do this because I am passionate about helping other sufferers with evidence-based help.
I have never said I could ‘cure’ lupus. What I have said is that diet and lifestyle play a role. They play an important role because they represent a chance for the sufferer to take some positive action that may provide great help. For me it is empowering to know that I can take responsibility for a portion of my condition and work toward making that one area as strong as possible. On a personal level I have managed to put my lupus in remission and I don’t believe that I am an anomaly....by any stretch of the imagination.
Today I feel like giving up with my quest. I have approached numerous doctors in the field of lupus to be told (by someone today) that “As far as I am aware, there is no evidence regarding nutritional additives, foods etc that will help lupus patients, over and above eating an appropriately balanced diet”.......this is an actual response I received.....I received this after sending 57 pages of evidence to this individual. How much evidence is required. Is our healthcare system so driven by the pharmaceutical giants?! Is it really. How tragic. How very, very disheartening for me.
Lupus sufferers say that their doctors tell them that dietary change won’t make a difference and since I am no-one in comparison to a doctor I am not listened to. This is such a blow to me, to my self-esteem, to my passion.
Yes, I am angry, I am sad and I have no idea what I can do as a lone individual flying a flag that is unseen by so many
I’d like to add that the Cambridgeshire Lupus UK group have been very supportive of my work. I am filled with gratitude for that. Unfortunately I think I will have to stop putting hours worth of effort in every day because it is blindingly obvious that I cannot continue to live without making an income. So it is back to the drawing board for me.
Thank you to everyone who has been interested in my work. I simply cannot continue to produce the writing I have been producing without earning an income from it.