Wisdom from the UK's Large Vestibular Support Group

The UK’s largest support group for anyone with a balance condition, with now over 250 members, mainly from the UK, but also with American and European members enjoying the English style of support. The group started in 2018, first as a physical meeting group in the UK midlands city of Leicester, with attendance getting quickly beyond fifty and of course, the pandemic saw the meetings move to online with the Zoom platform.

Goals

The group has two main goals:

1. To Provide support, friendship, advice, help to anyone living with a serious or chronic balance disorder (our definition is “if a balance condition is disrupting your life in any way – you are most welcome to join).
2. To bring Expert knowledge, information, and expertise to all of our members (and the wider community via meeting video recordings), that otherwise is too difficult for individual patients to access on their own.

Our lesser objectives, but still of key importance are.

1. To Raise awareness of balance conditions and the significant disruption to people’s lives, to the general public and media.
2. To Lobby and pursue improving of provision of medical treatment and medical resources for all balance conditions.

How we operate

We meet every 8 weeks, so 6 times a year. Frequently we will have a guest Expert Speaker, who will normally be a leading clinician in an area of treatment related to balance conditions. We encourage these experts to “tell us what they know”, but rarely have time to pass on to individual patients, and of course, take members questions during the meeting.

We also encourage “Member 2 Member” contact between meetings, where members “opt-in” to agree to share their first name and email addresses, so they can begin friendships and conversations with fellow members.

Another popular service is our “Members Appeal”, where one member may seek specific advice or others’ experiences on a certain treatment or an aspect of living with their condition. The appeals are emailed out to all members anonymously and we then connect the members together who have volunteered to give their help.

In all of our work, we do stress the importance of remaining positive and working towards improvements and a better quality of life. Anxiety and depression are all too common bedfellows with balance conditions, so we do spend a lot of time working in this area with members, as mental health and mental strength are key to getting back to a life more balanced.

Importantly we are all volunteers with various balance challenges ourselves. We are not a charity or a business, so all our work is simply to help fellow sufferers and we hope to build a better community and resources for those yet to encounter balanced conditions in their future lives.

Q&A With The Group Leader, Kevin Higgs

What was your motivation to start a support group?

I will try and make this the short version of a long story…

2005, no warning just a huge devastating shock to my life with the onset of Menieres – full-on attacks, loss of hearing, and on-set of tinnitus, all with no warnings, any day, any week – I thought my life as a “contributing human being” was over. I had four young children, a wife, and a big mortgage. My new marketing company was less than two years old and as the sales director, I thought I would lose everything. I was in full-blown panic, fear, OMG mode. I didn’t know it at the time (as I was so wrapped up in living my own horror movie), but I was a lucky one. In the UK health care is normally “Free” to the patients (we all pay indirectly via government taxes), but with “Free” comes too few resources, too few doctors, and certainly too few balance experts, so If I had waited for the UK NHS, It may have been a year to get a diagnosis and another year to start treatment. By then I would probably have lost my business, lost my home, and failed to support my wife and children – in my eyes then I would have been “pointless”.

I was lucky that I could just afford to pay to see a balance expert privately, and within 4 weeks I was on my journey to discover what a nasty condition Menieres can be but how there was hope to gain some control over the symptoms, even though it may take time and lots of pretty rough times to get there. Again in hindsight, I can see that although the early access to treatment was very important, the biggest positive out of my own experience was to discover that “there was hope” – that I would survive this massive attack on my whole way of life and the horrible disruption to my way of interacting with my world.

Many years on, not only did I regain control of my life whilst living with Menieres, but I was able to run a very successful business, continue as the sales and marketing director, and eventually take an early part retirement with financial security – all of which seemed impossible in 2005. I guess then after getting off the full-time employment “conveyor belt”, I suddenly had time to think and reflect. I realized only then how lucky I had been back in 2005 and if I had not been able to get that huge “dose of hope”, I would certainly not be financially secure, and my family may have been broken on that “anvil of suffering and misfortune”.

I think also I had that urge that many get as well at a certain stage in life, that after gaining so many blessings from our life and community, it is then the right thing to do in finding a way to “pay it back”.

So, my mind then imagined another Kevin, just encountering Menieres of another balance condition today, and what if they were not so lucky to access a private medical expert, what if they had a family, a job, or a business they could lose, and who would give them the message of hope? I still get that horrible feeling today, as I did six years ago, thinking of people alone with a new balance condition, and nowhere to turn to for a diagnosis, treatment, or to understand what is happening in their life. That’s when I realized I needed to do something that could perhaps deliver “hope” and some practical help until medical treatment could be accessed.

Why a support group and not a non-profit organization?

Honestly, I didn’t even know you could ever have a support group for balance conditions. I first started by contacting and getting to know UK charities (and of course, I already knew of VeDA and its great work and brilliant website resources), but all charities seem more about the great task of supplying knowledge via websites, and not so involved in getting down to an individual sufferer level. So, after a year of looking around and considering my options to “provide hope” I came to the conclusion that I needed to work at the individual sufferer level and get to that personal level where we deal with individual emotions, challenges, characters, fears, and eventually successes. The only advice I received was “don’t do it”, as then UK support groups tended to be a few people (less than ten) and meet on a very “local” level, so they could not reach many people, so by definition they could not delivery that hope to many people. But one advantage of seeing the not-for-profit organizations was that I realized I didn’t want to ever get involved with funding, money, or salaries – I just wanted to find a way where the group could run with no money and no staff, and simply be a perfect democracy or cooperative, where even a leader is not a requirement. So, the good news is that we spend 100% of our time just focused on how to help people, and we never have to get into admin, writing funding applications, or fundraising. Of course, the bad news is we have to restrict what we do to being “free”, but it seems to work just fine for now.

But one thing that always has resonated with me – If I could jump in a time machine, and visit myself in 2005, knowing what I know now, I could have taken away from my younger self years of mental anguish, so many days full of fear and hundreds lonely nights of imagining the worst. I also think I would have found my recovery so much faster and have enjoyed my life so much more in those early years. So, I guess what I am trying to create is the next best thing to a time machine for all of our members, where we accelerate their learning and build their hope. Watch out back to the future!!

What are the biggest lessons you’ve learned so far?

I guess I have to split that into two categories. Leanings in terms of running the best support group possible and personal leanings.

For the group, I would say the key learnings are:

There are so many varied balance conditions, and even if diagnosed with the same condition, two people can have very different symptoms or challenges, and then to add to the complexity, we as individuals deal with our challenges in very different ways from each other. Often we need to learn new skills as we have never faced adversity before. Once you realise this infinitely variable audience is out there, you see that we as a group have to offer a “smorgasbord” of tools, information, advice, and varied forms of help – and simply let our members decide what they need and importantly “what they are ready to embrace” whilst on their own journey. So, we try not to be prescriptive or overbearing in our advice or approach to any member.

I was surprised to learn that a very close second to the issues caused by our members’ physical balance symptoms, comes very common mental health challenges, whether in the form of lack of confidence, anxiety, or diagnosed depression – it is all very real and makes a lot of sense when you consider how our lives are literary turned upside down in every aspect.

A huge and important learning was that our excellent medical clinicians have no choice but to focus on “fixing us”, but that leaves them with no time to consider or discuss with any patients “how to carry on and cope with day-to-day life” any yet without that advice and hope, we may well need more medical help and be less responsive to their treatment (as we have not got the clarity of mind or strength of will whilst being under such mental strain). So, it is only now I see the importance of health support groups and would encourage a long-term future where clinicians and support groups work hand in hand.

For my personal learnings – they have been more profound:

I never knew real adversity until I encountered my balance illness, and whilst I would not wish Menieres on my worst enemy, I have to admit that my own adversity and then finding an outlet in running the support group to help those with the same challenges, has made me a better person, a more humble person and taught me the value of enjoying the moment and not assuming every day will be full of joy -so the group has really helped me as well as I hope many others.

What was previously a hunch that “hope” may be the most important thing, even before help or treatment, has now moved from a hunch to a “certainty”. I have witnessed so many times in the last 5 years where individuals have been lifted from a low and lonely place simply by understanding (from others) that there is “hope” of a better future. People with the weight of the world upon them and also engulfed in their own fear, find the first moments of relief and catch a few rays of hope, and that is enough to start them on a journey back to a better place and escape from that whirling world of dark thoughts and hopelessness.

The final learning, that I wish I had known in 2005, is that simply by sharing your fears, your symptoms, your challenges, in fact simply sharing of yourself, with other human beings, (especially one who understands what you are facing), is the strongest dose of help you can ever get – to finally know you are not alone and others can help – I truly think all health clinicians should find ways of allowing fellow patients to communicate and find each other – the benefits are too great not to do this.

Do you have any advice for anyone wishing to start a support group?

Oh yes – may be too much for your article today, but simply start by contacting me and I can then give you more details. But as a starter, I would list the following:

• Remember a support group is for its members, not for the organizers. Try and avoid money, fundraising, and bank accounts.
• Involve local clinicians and see if they will attend some meetings.
• Be prepared for many many hours of hard work, with little direct thanks.
• Do use a good website and emails to reach your members and prospective members.
• Do affiliate with VeDA and follow their free guide to running a support group.
• Realize that you can’t help everyone, but just by helping one other soul, you have “done good” for the world we live in.

Any last words for the readers?

I would appeal to all of your readers, that either “to receive” support, or more often members begin to actually “provide support” to others, please do consider joining a support group – It is great fun, interesting, and very positive. Also, one thing to consider, depending on how long you have had your balance condition, you may well be now an “expert” in your own condition and you then have valuable information to share with others! My message especially for the men out there – please don’t be the stubborn, isolated male ego that I was all those years ago – try a support group and see how participation helps you in so many ways and it does not define you as “ill”, it simply helps you get back faster and more efficiently to a better life, and when you are in that better life, you leave the group, as you no longer need that support. (And I tell all of our members, we want to be redundant in everyone’s lives eventually!) So, I look forward to being redundant one day, but for now, we have lots more hope to deliver and many more people to
reach.

 

By Kevin Higgs