When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be negative. Just before my second major operation in 2011, I decided to take the plunge and registered with a UK NET online web forum (not a Facebook one). Looking back to that period, I wasn’t really a major player, more of a ‘lurker’. I’m no longer a part of this forum as it is very ‘cliquey’, has no security (you can read all the posts without a login) and people just wanted to talk about the weather and sheep. I think the clique have driven most people away, leaving just the clique. I should have listened to the initial advice of that fellow patient! However, as I was to find out later, the real and more positive forum action was happening elsewhere.
Joining Forums. In 2014 (4 years after my diagnosis), I joined several large Facebook closed groups which function as forums. You cannot view the content of these groups unless you are a member i.e. they are more secure than their Web equivalents. After 4 years, I felt more experienced and knowledgeable and I wanted to learn more about the disease to help with my blog activity. As a reminder, the aim of my blog is to spread awareness of Neuroendocrine Cancer, but in a positive way in order to generate both internal and external interest (the latter is a key component of my strategy).
Be prepared! I really was not prepared for what I found in these groups. It seemed many people were in a much worse condition than me and I was shocked by some of the things I read (and saw) and I considered leaving pretty sharpish – quite frankly, it was stressing me out!
Forums don’t represent the whole NET Patient population. It suddenly became obvious to me that the actual ratios found on forum sites do not equate on the outside, i.e. even on the bigger forums of 2000+ this is not a good representation of the NET patient community when you consider there must be well over 300,000 patients worldwide. For example, on forums, it often appears that everyone has some form of ‘syndrome’ when in actual fact the ratios are much much lower. If you agree with the logic above, this forum ratio of patients is a particularly relevant point for new forum members who, upon joining, will suddenly find that every symptom in existence seems to be continuously (and repeatedly) associated with the disease, causing further distress. If you think about it, more people are likely to say “yes I have that problem” than “no I don’t have that problem” in response to any question. Regardless of how bizarre or outlandish the question is, someone will nearly always respond saying they also have that issue which can unfortunately and on occasion make it seem more prevalent than it actually is. Perhaps more patients should say “no, not me” to prevent these frequent perceptions and misunderstandings. I think that large quotas of the forum population will simply be ‘lurking’ picking up bits and pieces of interest but not contributing. I guess I was initially in that sub-group – probably still am to a certain extent! All of that said, you can pick up some useful information in some of these exchanges but only once the ‘shock factor’ wears off.
Diagnosing the Undiagnosed. There are also many ‘undiagnosed’ people on forums searching for clues for their long-standing illnesses. This isn’t surprising as Neuroendocrine Cancers are notoriously misdiagnosed as routine ailments, in some cases for years. I guess the power of the internet leads them to forums. These cases tend to come and go and you can almost sense the frustration of those who believe they have NETs but are not yet medically diagnosed with any illness. I really feel for these people and I feel helpless that I’m unable to wave a magic wand. However, I can’t help feeling that some might be convincing themselves they have Neuroendocrine Cancer by what they read, or perhaps have even been nudged (further) into this belief by their well-meaning audiences who, like me, are simply trying to help? Only my opinion.
Be prepared for toilet conversations. A much discussed topic and sometimes not for the very squeamish. I’ve seen some unusual pictures on forums but the worst by far was one of someone’s faeces. I struggled to understand why anyone would post that – moreover, I was amazed the site administrators allowed it. No thank you!
Be prepared for God conversations. There is a lot of spiritual and religious content on certain forum sites. I’m not a religious person but I totally respect that many people are. However, on some forums, there is a very heavy religious and spiritual message presence and this may not be everyone’s cup of tea.
Be prepared for strange behaviours. One of the most hideous aspects of forums is the appearance of ‘on-line bullying’ or arguments which happen now and then. However, definition is important here. Cliques of core users can appear overpowering particularly when someone disagrees with one of the ‘clique’. If you want a very wide-ranging set of opinions on some basic NET information – join a forum! Be prepared to see disagreements and many ‘one to ones’ or ‘one to manys’. Fortunately, it’s uncommon and a well-administered site will deal with it quickly. I recently left one UK online web forum after very politely suggesting a different opinion to the ‘reigning clique’ which resulted in a coordinated and personal tirade against me (i.e. online bullying). The posts were removed (indicating the administrators agreed with my complaint). Amazingly some of the ‘reigning clique’ followed me to another forum and continued their personal attacks (again posts were removed when I complained). Administrators need to stamp on this sort of behaviour when it happens and not 36 hours after the event. My advice is not to join an unmoderated forum. In another but different example of bullying, I was blocked from one site without notice or reason and to this day I have never found out why, despite trying very hard (although I suspect ‘politics’).
Be prepared for masses of ‘tat’. Another area which puts me off certain forums is the masses of ‘memes’, pictures, quotes, miracle ‘snake oil’ cures/medical myths and stuff you see plastered all over the internet – these things are the ‘junk mail/spam’ equivalent on Facebook and some can also be a security problem. I’m very surprised the administrators allow so many of them as they clog up the timeline making it easy to miss an important post and they can present security risks for those who click on them.
Be prepared for masses of black and white striped animals. I don’t do zebras, I’d rather talk about people. I therefore find myself objecting to being described as a ‘Zebra’ and part of a ‘herd’. Side by side, a post (say) about how to improve quality of life or someone asking for help is likely to get less views/likes/comments than a picture of a Zebra …… that can’t be right. I tend to ignore these posts on any social media. If anyone wants to fixate on zebras, that’s fine ….. just don’t expect me to join in!
The strange thing is that in contextual terms, the zebra represents the disease, so when someone says “I am a zebra”, this is in effect saying “I am a disease”. The problem is that the NET community has become “too cute” with the term and it now lacks any ‘kerb appeal’ to the outside world.
I have my own strategy for spreading awareness which seems to be well received and more understandable to external audiences and many NET patients. Moreover, my awareness strategy covers a much bigger spectrum than offered by the narrow and blinkered diagnostic messages inferred by this aged and often misquoted equine analogy. I say Let’s talk about people not hoofbeats. By the way, NET Cancer is not as rare as you think.
Don’t let forums be your life. I’ve recently cut down my membership of groups, not only because they were not a good fit for me but because forums were taking over my life! I found a lot of the content was making me depressed, mostly due to all the issues outlined above. So, I’ve left most groups. I occasionally visit to take a look for anything of interest. You can search really easy in a Facebook forum to read about a particular subject.
Are forums ‘frighteningly good’? There can be a lot of positive outputs from forums and to be truthful, I have learned a lot and made some online friends too. One of the most amazing things I found was the presence of NET Cancer specialists on certain sites. I found it astonishing they even had the time – but they are there, contributing to posts, trying their hardest to answer questions aimed directly at them – 24/7. I’m sure the forums are very useful for some people who are able to prioritise and filter to take what they want from the sites. Some people also use them as a lifeline due to a lack of support in their local area. In that respect, they are frighteningly good.
Are forums good at ‘frightening’? Yes, they can be good at frightening for those already in an anxious or delicate state. I like to help people but for the first couple of months after joining, I found myself feeling totally helpless with the sheer number and range of problems. Unfortunately, well-meaning people give totally different and dangerously conflicting answers, even to simple questions. I find this very frustrating even though I learned to prioritise and filter – I just felt bad that the questioner was getting no answer (50 different answers is no answer) or the fundamentally wrong answer. I also noticed that some countries are more prevalent users of forums to ask fairly significant and critical questions of other patients. Sometimes I think this is perhaps an indication of the health system in place and/or a lack of access to proper NET advice from professionals. I think there can be a lot of ‘firing from the hip’ on forums and sometimes it motivates me to write a blog on a particular subject having done a week or so research and with careful thought.
My own Blog site is not a forum. It’s worth pointing out (particularly to those who run the forum sites), that my blog with its associated Facebook page is NOT a forum. Nor is it a fundraising or selling site for those who are twitchy about this. My blog is not aligned to any particular foundation or fundraising organisation. I just want to send out some positive messages associated with a particular blog subject which will invariably be about Neuroendocrine Cancer awareness and support. I also function as a signpost for those who may be a bit ‘lost’ and I find these frequently in some of the more obscure and non-NET groups; and in increasing frequency, they are finding me through my digital footprints on numerous social media systems. I’m always happy to talk to people in general terms but I prefer to direct people to the most appropriate and reputable NET supporting organisations and forum sites, particularly in their own country.
I now receive dozens of messages/emails every week but I find myself increasingly hesitant to recommend people I don’t know too much about to certain forums. Don’t get me wrong, I think some forum sites do a great job but they can be pretty frightening places for the unwary (and on occasion…. the wary!).
thanks for reading.
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