I thought long and hard about writing this blog. It’s been in draft form for months, but I finally decided that enough is enough and I want to make it clear, who I am and how I work.
At this point I want to give heartfelt thanks to all of you who show kindness and support for my work. I am so happy to have helped those whose lives have been affected by B12 deficiency over this past decade and I’ve been lucky to have made some life long friends.
Some of what I have experienced over this past ten years is a story of jealousy and unkindness and that takes its toll. However, I’ll carry on trying to educate, to share and work to try and make B12 injections available OTC from pharmacies.
A little bit of history
It was ten years in September since I launched my site, which I wanted to work as an information hub. I wanted it to be a place for the general public and health care professionals to use in order that they found a quick route to the information they needed to fully understand vitamin B12 deficiency.
My passion to do this was borne out of my own experience in trying to help a psychotic loved one with a severe undiagnosed vitamin B12 deficiency. Unfortunately back then, all I was able to do was give doctors disparate links to sites and journals and this approach wasn’t really working well.
Laura, a good friend of mine, suggested I create a website. It would be a destination for all the research and Information I wanted to make easy to find. Pat Kornic put me in touch with Sally Pacholok who kindly agreed to allow me to use her research on my site. I wanted to highlight B12 deficiency and its impact on mental health, children, pregnancy, fertility and the fact that it is commonly misdiagnosed. In mid September 2013 the site was launched. Looking back now I can’t quite believe I did it. I had never wanted to work on a computer, but sharing information and helping others who found themselves in my position became overwhelmingly essential.
My lovely nephew, Ryan, would type up what I had written in long hand and information from Sally’s book “Could it be B12? An Epidemic of Misdiagnosis”. Damian, my lovely husband, designed and built the first of the three sites we have had over this ten years. He also turns my pencil designs into brilliant images and has always supported me in this sometimes, harrowing and exhausting role running www.b12info.com. Without him and his incredible work we simply wouldn’t have a site.
New visitors to my site may not know that I served a kind of self guided apprenticeship in B12 deficiency. I joined Pat Kornic’s Facebook group in early 2012 and read, researched and learned.
Once I launched the site I worked tirelessly to field the constant email requests for help. I would panic if people waited more than a couple of hours for a response. I would work at weekends and even Christmas day to reply and offer help to anybody who requested it, completely for free.
I was inundated and was often asked for help by nutritionists. On two occasions I was mistakenly sent the emails from the nutritionists I’d advised, thinking they were replying to their patient. They happily gave my freely given advice to their paying client but never credited their source or gave links to my site that would have empowered their patients to do their own research. Naturally I felt that this was shady behaviour and akin to being given one page of a book rather than the volume. That’s not how I work so I was shocked.
Time for change
By early 2019 I was burnt out, completely overwhelmed. I’d had enough of feeling like I was treading water. I was working more hours than a full time job and gaining nothing but stress. I was neglecting my own relationships because I was so scared of not helping genuinely needy people, but I was jaded by those who used me as a free way to do their own jobs better. I felt sick every time an email arrived and I wanted to turn the internet off.
Damian and I used spent our savings funding two conferences and creating apps that we hoped would contribute to the costs of maintaining the site. Unfortunately some felt I should not make any charge for these services and thought I should provide everything for free because it’s about health. Not one of the people complaining worked without getting paid but they felt very strongly that I should. There was little understanding that I have to keep a roof over my head and eat too.
Charging for my work
A lovely man who I’d helped, told me….
You have helped me more than any doctor has and you should be charging for your work.
Actually hearing someone say out loud that my work was valuable and that I had something to offer made me think. I ran this suggestion by Sally Pacholok and Pat Kornic who both whole heartedly agreed that I should be charging for my skills and experience. Six years’ working for nothing was more than long enough.
This was a big thing for me. Very big. Obviously, I had no formal training in this area and yet I knew I was helping highly paid professionals to do their jobs well. I eventually took the plunge and this meant that most of the cheeky, time wasting people dropped away and made space for those who valued my work.
I still occasionally, have people writing to me asking me to do their research and find papers for them as they are doing a Masters in B12 and the odd practitioner who thinks their time is far more important than mine asking: ‘Can I just quickly look’ at their patients massive case history and advise without payment? Obviously I tell them I have plenty of time to do their work too and I’ll also pull in a weekly shop for them, get dinner ready and finish off any ironing they have too…. I use the term ‘brass neck’ in situations like these.
There has been periods of real animosity toward me throughout this past decade. This increased when I started charging for my work. When I say work, I mean one to one consultations, speaking and writing to doctors and consultants for those who choose to work with me. I already had experience in educating and lecturing on B12 deficiency to groups of professionals and students but another wave of animosity came my way when I created my courses. After all, who did I think I was educating on vitamin B12 deficiency…?
My site is set up so that anyone reaching it can help themselves, most visitors do not request my personalised help, they have a loved one to help them navigate the site and use it’s resources and information. Some of you whom I have never worked with asked if I could add a Donate button to the site because they were grateful to find the information held within it. It took many years for me to feel ok about doing this. You’ll notice that I don’t keep any of my work, blogs or letter templates behind a paywall for the very reason that I want those who visit the site to access all of the information for free.
I am very deliberately not a charity. There are good reasons for this:
Firstly, there were already two existing British charities who were raising awareness of BI2 deficiency and PA back in 2013.
Secondly, I mistakenly thought my site would act as a stand-alone hub of information with no need for any interaction with me. Thirdly, I didn’t want the hassle of the associated bureaucracy. I just wanted to get on with the job of raising awareness and to have the freedom to blog and speak about B12 deficiency without having to run things by a committee.
I maintain that there is absolutely no shame in my not being a charity, but there are plenty of people who would disagree with my statement. For some strange reason, some people feel that a charity asking for funds is absolutely fine, but that it’s abhorrent somehow, to pay someone for a great service who is being very clear about (and delivers) the service they offer.
Some years ago I was told about a Norwegian doctor who took to using my posters, but passed them off as his own work by removing my Information. I thought that was a bit rude and was helped to tell him so. (Thank you, Gunhild!).
Plagiarism of my site happens repeatedly and it’s an age old problem for many people who share good work. If you care more about helping others than you do about satisfying your own ego, then you know it’s always so much better to reference your source of information and credit others. People really appreciate you doing this!
I am not medically trained
Some people write to me and tell me that I’m not medically trained, as if I didn’t know! Funny that, I make no secret of this fact. Those who are offended about my lack of medical training try to use it as an insult, but I’m not in the least bit insulted by not having followed a career in medicine. In fact in this field of work, I see it as a strength. I was born with kindness and empathy and I have great communication and problem solving skills. These are my tools and I didn’t require medical training for any of them.
I’m good at imparting information and educating in a clear and concise way. My skills also help people to navigate their way through their particular health system, whether that’s in the UK, Europe, the US or much further afield. I have provided support and guidance for people with B12 deficiency across six continents and have a particular propensity for helping in cases of poor mental health and in children’s cases.
Blocking the path to help
There are some incredibly helpful B12 sites, groups and forums out there and I do not include them in the following…
There have been occasions online that I have been alerted to from concerned people who see that others try to defame my character and I’d like to thank you publicly for your kindness!
When people witness how I am treated they may stay silent publicly, but email me privately to express support. They don’t want to ‘out’ themselves and align themselves with me because they may be targeted too. Some just silently ignore the abuse even though I may have helped them personally. I fully understand that it is difficult for some to speak out and that any kind of confrontation for some is terrifying. Anyone who knows me, fully understands that I always stand up for myself and for those I see bullied, or gas lit, or who are in need of support. I can do my job effectively, simply because I don’t succumb to bullying behaviour.
I understand that people are careful about sharing links to my site due to ‘in house’ censorship. Some groups will commonly delete links to my site when shared by a member, not because it isn’t helpful, but simply because it is. Some want to eradicate the competition as they see it. They feel, in their infinite wisdom, that they can do better and they don’t want people to have a choice about who helps them. You may be warned: ‘we don’t trust that site’, ‘she charges for her help’ ‘that’s a misinformation site’. In this situation I would urge you to do your own research, it’s always the best way for you to discern what’s right for you, rather than what’s right for another agenda entirely.
Some ‘support’ groups have rules which ban private messaging between members…..Isn’t that a bit odd? Why would that ever be a group rule? Sounds just like a dictatorship to me. Thankfully some people in need have found my work precisely because a kind soul has gone against this controlling ‘rule’. Quietly sharing my site in a private message because they saw someone they felt they could do with my kind of help. To all those who use this tactic may I extend a huge THANK YOU and congratulations, YOU really care about people and we really appreciate you going above and beyond!
All the above, frankly odd behaviour, appears to be rooted firmly in the land of jealously. Those of us in possession of good emotional intelligence know that jealousy is a harmful emotion, it consumes people who engage in it and colours everything they do. People who behave in this way may have extremely low self esteem. They are bullies and will turn on anyone who doesn’t go along with the lies they spread. Surrounding themselves with likeminded people who appear to be totally unable to think for themselves or who may actually be too afraid to stand up for what is right.
Sharing is caring
If any one tells you that you can’t share good, trusted information, then there’s something seriously wrong. If you have been lead to believe I am not as I seem via my site then you are very welcome to challenge me, I am very approachable.
I don’t do this work to promote myself, I do it because the lack of knowledge of B12 deficiency wreaked havoc on the lives of people I love and I want to help try and stop that happening to anyone else.
Genuinely, I believe there is room for everyone, that we all have something to offer, that people will choose who they want to work with given the choice. The B12 problem is so enormous that there is absolutely no need to compete with and defame people who are trying to make a positive change.
I’m not going to be everyone’s ‘cup of tea’, I appreciate we are all different, what suits me doesn’t suit another. Some will choose to work with me, others won’t. It’s important to find the right fit for you. But kindness is the key and sharing is caring. I share information I think will benefit others even if it originates from a place that derides me. I do this because actions always speak louder than words and nobody needs their path to help and healing being blocked.