Author: Gaynor Leech, Founder of L-W-O
Five years ago, there was such a negativity around social media support groups in the UK from the medical establishment it is a wonder any of us have survived. Not only have we survived we have prospered. I know we are not medically trained but we know more about lymphoedema than many of our health-care professionals. Why? Very few health-care professionals receive any training on the Lymphatic System.
Those of us living with lymphoedema like myself have had to learn to be our own advocates.
I was diagnosed with Breast Cancer in October 2010, I had a successful Wide Local Excision, the cancer was removed with a positive prognosis for the future. However, it was advised that I should have 15 days of radiotherapy just to make sure all the cells had been ‘mopped’ up. Little did I know that there was a possibility that my successful treatment would lead to another condition. That condition was lymphoedema. I had never been told that this was a possibility and the first thing I heard when my oncologist told me that, it was lifelong and incurable. At that time, I did not hear it could be managed and treated.
Little did I know then that I was about to embark on a new journey that, would change my life
The devastation was immediate not because I had been diagnosed but that there was so little knowledge, education and information to help me understand my condition. Having to explain constantly to people who think they know how my body was behaving better than I did because they were medically trained. If you asked them what training, they had received on the lymphatic system you were met with blank stares. Often, they would huff. One such professional asked me why this was so important now "it's been around for years, so why do you feel what your doing is necessary?" Really! These sorts of attitudes just make me more determined to continue raising awareness.
Learning to manage
On diagnosis you quickly learn a new set of life rules, skin management, top priority, drinking more water, watching what you eat because some foods can cause inflammation and finally to keep the lymph fluid flowing to stop it stagnating and causing infection are all part of our daily life challenges. So, if I was struggling how did everyone else manage?
Learning to manage my condition without social media for me personally would have been impossible. When I started this journey in 2013 to raise more awareness, very few UK social media closed lymphoedema groups existed and numbers were small. By closed groups I relate specifically to Facebook, you can join one of these groups and only members of individual groups can see the posts, offering a degree of privacy.
Closed social media Facebook groups range from those who deal solely with Primary or Secondary lymphoedema or groups like L-W-O whose members have both Primary and Secondary lymphoedema. There are groups whose sole purpose is for the members to ask and answer questions giving support. Or groups like L-W-O who also give support in the same way, but when we can, we provide information from across the globe on education, research and anything else that might be relevant to self-managing lymphoedema and improving the life of our members. All these groups provide a vast amount of knowledge and expertise, the often-simple little tips that make a big difference to self-management.
Frustration
Members of L-W-O are all thoroughly fed up with the lack of support that they feel they receive. The disparity of support between Primary and Secondary lymphoedema is huge. If you are unlucky enough to be diagnosed with Secondary lymphoedema due to cancer treatment, then support is more readily available at least for the five years you are in the system because of your cancer.
Those living with Primary lymphoedema which is often genetic, runs in families and caused by faulty or missing genes, if not diagnosed at birth, then an official diagnosis could take years. At one stage on L-W-O we found that a diagnosis was taking an average of 17 years for Primary lymphoedema. We have several members that have taken decades to get an official diagnosis. In the 21st century this is not acceptable.
We have a wonderful NHS in the UK however there is still a lot of work to be done in educating the professionals who have little or no training in lymphoedema and this why we who live with this condition must play our part. Learning to be our own advocates is a challenge but one that has become necessary.
Accessing Information
In 2013/14 groups that were easily accessible via personal social media accounts were virtually non-existent in the UK. Now, there are at least seven good active groups that I know of, all started and run by people who live with this debilitating condition of lymphoedema. Each group brings a different approach but has the common aim of supporting those of us living with lymphoedema, providing a place to chat to someone in the same position.
While there is some membership crossover between the groups, the above graph shows that the most popular closed social media lymphoedema groups in the UK are now being accessed by 5000 people and that number continues to grow. Smaller groups exist that I don’t have access to. This doesn’t represent the whole picture because Facebook Pages (open to the Public), Twitter and other social media platforms are not taken into consideration and these other social media platforms have huge followings.
LSN, have the very good Health Unlocked Forum currently with over 3,461 members and their Facebook Page has 5.4k followers. While this article isn’t about public social media platforms it does show that several thousand people are accessing lymphoedema support and information via the internet in the UK.
I am saddened that those of us living with this condition are often having to find our own information
I am thrilled with what social media groups have achieved and the support they offer to their members
In the UK we have three professional bodies that we can access they include the Lymphoedema Support Network (LSN), British Lymphology Society (BLS), and the International Lymphoedema Framework (ILF) and I have an individual membership to the LSN & BLS and I am an affiliate of ILF. LSN are extremely supportive to our groups and they produce several information sheets available to their members which meet the NHS Information Standard. Their social media presence has also grown rapidly over the last few years. We also have the National Lymphoedema Partnership which was formed in 2014, sadly we see very little information from this organisation although my understanding is they will be producing a document in October ‘Commissioning lymphoedema services for adults in the UK’. Our members need to see that lymphoedema organisations are making progress to get this debilitating condition recognised.
One very important note in the UK we call lymphoedema a 'condition', I frequently get lambasted by our Canadian and American friends because in their countries lymphedema is a 'disease'. My personal opinion is that I don't want to think I have a 'disease', but I do feel strongly by calling it a 'condition' we underplay the significance of having lymphoedema and both the physical and mental devastation it causes to those of us living with this 'condition'.
High Visibility
L-W-O’s has a high social media presence with Facebook support group, community page, Twitter, LinkedIn and Pinterest. Through our social media presence in addition to our 1062 plus membership on our support group with an average weekly engagement of 2.1k, we have 1000 plus followers on our other social media platforms. We have a global reach and I am proud of the fact that our social media friends in Canada and the USA are willing to share their experiences and knowledge with us.
One of our biggest advantages is this website, it is easy to read, visual, written from a patient’s point of view and is constantly being rewritten. For the first time in nearly five years we are using less stock photographs and using the photographs our members have sent us. We have now reached over 280,424 viewings and presently we are averaging 1700 viewings per week.
Where do our members comes from?
L-W-O Age Range
The benefits of using social media
We operate 365/6 days of the year and our big advantage is that we operate around the clock and it is rare that a member doesn’t get a response. Members feel that we give them a voice, they can ask questions and know within a very short time they have an answer or suggestion how they deal with a certain problem. We often get a conversation starting with “This will sound like a stupid question”. My answer is “if you are worrying or needing advice, then no question is a stupid one”. The other comment we get is “I am sorry for the rant” usually followed by “I have nobody else to talk to”.
Closed support groups allow those living with lymphoedema a platform to have a voice whether it is about the condition of lymphoedema, the pain, body image issues, lack of GP understanding, dismissive attitudes of other health care professionals or even well-meaning non-lymphies who after asking questions still don’t understand how our members feel. L-W-O has lost count of the times that, after seeing a health care professional our members have left in tears followed by anger and frustration leading to more stress.
Frustration = Stress
Stress is not good for lymphoedema.
Those living with lymphoedema, often have other conditions that are not related to their lymphoedema that include various types of neuropathy, fibromyalgia, arthritis, heart and diabetes to name a few. Anxiety, depression is never far away and is totally underestimated. On two seperate occasions two of our members were so distraught that I honestly felt that they might not be with us the next morning. That means I didn’t get to sleep, worrying about them.
Social Media groups are not qualified to deal with this level of anxiety or depression, yet services to deal with mental health problems associated with lymphoedema are few and far between in the UK. Thankfully, both members were both online next morning, profusely apologising for the explosions of feelings and acknowledged that the members advice and support had carried them through the night. This was a steep learning curve and from then on as a group we have got better at signposting to LSN, Macmillan and other appropriate charities or oganisations. The team at LSN have given me and our members amazing support and for this I am truly gratetful.
One of my biggest frustrations in the beginning was that information was often provided by are friends in the USA even if it was something happening in the UK. However, the sharing of information on research, services, articles both in the UK and globally has increased dramatically over the last two years. The last 12 months the Oxford Lymphoedema Practice has also started to share information with easy to follow graphics. The power social media has given those of us living with lymphoedema is a voice that should not be under estimated.
Embracing our success
Our success comes from our ability to embrace social media, to constantly evolve, to hear what our members are telling us and most of all to share as much as possible the knowledge on research, development, and information from the wider lymphoedema/lymphedema community both here in the UK and globally. I understand that there are those that will scoff at the closed social media groups, I understand that this is not for everyone, I understand that not everyone will have access to these groups, but they are important because they give those of us living with lymphoedema/lymphedema hope, support and friendship.
Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has - Margaret Mead
Source
L-W-O Facebook closed support group insights updated on a weekly basis
Health Unlocked Forum statistics: https://healthunlocked.com/lsn
Throughout this article you will see two different spellings for Lymphoedema (UK) - Lymphoedema (Canada & USA)
All the material on this blog is set out in good faith. Thoughts and interpretations are mine. Every effort has been made to acknowledge sources.
