Support….what does it mean? To me support means a multitude of things. We need support throughout our lives for a number of reasons, but when the sh*t really hits the fan, who is there to support you when you need it most?
When I first started getting symptoms back in 2009, it was all so worrying, I did not know what was wrong with me. For two years I searched for the right diagnosis, in 2012 finally got diagnosed with chronic vestibular migraines. It was all very alien to me. Back then there were no Facebook support groups or anywhere I could turn, so I had to pretty much deal with it all on my own as no one I knew had the same as me.
Then when I had the double blow of a second diagnosis of vestibular neuritis in 2013, and on top of that diagnosed with general anxiety disorder, depression and PTSD, life was not very enjoyable at all. I can talk about it now without crying or grimacing, but I did really feel like ending it all quite a few times. That is a big thing for me to admit to as I am not a person who gives up on things, but I was in a world of trouble back then.
Although there were no online groups I knew of, I did have my small support network in place, my mum and dad came to pretty much every appointment with me and still do to this day. I did not force them to, they chose to. They took the decision to support me in my journey, my quest for healthier days. Driving me to appointments, sitting for lengthy times in waiting rooms and listening to my consultants, watching me fall off chairs in VRT sessions, taking me to CBT sessions, giving me tissues when I cried (a lot!), they had my back.
They were witnesses of my debilitating lows, something I never wanted them to be subjected to, but they wanted to be there for me like I would be there for them. They wanted to learn from the bottom up, they wanted to understand from the horses mouth why this had happened to their daughter. Attending appointments really helped them understand the severity of my conditions and they have spent time researching themselves to try and understand. My husband on the other hand did not attend appointments, but he was my HOME supporter, he picked me up when I fell, he uncurled me from my foetal positions! and he was my sounding board, my rock. It has been very tough on him to see me so ill but without him I would not be where I am today. So although he did not attend the hospital appointments, his role was vital in other ways. Other marriages would have broken down after what we have been through with my illnesses, but we pulled through the few ups and very downs.
It is a shame that it takes you to become ill before you know who is truly there for you. After 8 years of dealing with my debilitating disorders I now certainly know who to turn to in my hour of need. It is heart wrenching, when you have been there so much for others, that when you need them they are not there for you. It is a very hard lesson to learn and one I have had to now move on from.
As support is so vital for invisible disorders, I started a support group on Facebook in the Autumn of 2017 called Mummy Seeing Double Support. It seemed that people were in the same boat as me, they had very few people who were there to support them so felt quite alone sometimes. I had my public page but I decided to create a closed group, somewhere private that people could go when they needed. Like them there are certain things I do not want my family or friends to read as these illnesses are harsh on the ears, so a private group was the perfect answer. We share tips, advice, we support each other, we totally get each other and it is somewhere comforting to go as we feel less alone.
People often forget that the number one supporter you have, is yourself. You have to learn over time to support yourself and be kind to YOU. Only you can truly help yourself and get into a better mindset. Only you can make decisions. Only you can change.
The other thing I have learnt about support is the quality of the support we have around us. Yes people say they are there to support you, but do they truly know how they can effectively support you? Have they read about your conditions? Of course I do not expect people to become medical masters of vestibular and mental illnesses but I would expect a basic level of some understanding, some research. As humans we have the great ability to be able to read, some people just need to practice it more!
So the quality of support is important, we do not need to be judged, to keep answering silly questions 8 years on about why we have these disorders. I spent countless hours at the beginning sending links to friends and family and left it up to them to read up. I do not have to send links anymore, the web is riddled with information at the touch of a button. I also have my blog that talks extensively about my daily struggles etc Understanding is the key to a quality and empathetic supporter. I will give you an example….
My husband sufferers himself from health issues, he has an eye condition that was really getting in the way of him enjoying his day! And was very sore for him and had potential of getting much much worse if left to its own devices. I decided to help support him as much as I can and I joined a facebook support group for his condition. I spent hours on end researching his condition and how we could make it better. After testing many products, we succeeded to find the right solution and made it better, I am still a member of that said group and will remain so just in case there are any flare ups.
Of course I am not saying I expect everyone around me to join support groups and spend hours on end researching my conditions! However I do appreciate people who have made the effort to learn the basics.
I am extremely passionate about raising awareness of my conditions through my blog website and on Instagram, Twitter and Facebook. It takes seconds to share posts, like or comment, so next time you are on my social media pages I would love a like or a share so that we can increase awareness of these debilitating conditions and help others that like me back in the early days was so lost.
I am starting a challenge tomorrow to raise money for the amazing charity who has helped me and countless others, http://www.vestibular.org VEDA. I have a donation page that can be found here https://vestibular.org/civicrm/pcp/manage?id=434 Please consider a small donation to my cause to help others who have not yet been able to bring their lives BACK-2-BALANCE. Your support means so much to me.
I will continue to support other sufferers as much as I can and look forward to welcoming new members to our lovely support group.
I would love to hear from you about your support network, or if you currently have no support, how I can support you? You are not alone, remember that.
Thank you for reading.
2 Comments Add yours
I’ve suffered from vestibular illness for 3 years now and have now developed an anxiety problem which is paralysing me at the moment.
Unfortunately I am a teacher and being unbalanced has created huge problems for me. I am taking a sabbatical starting this summer and have started counselling. I don’t do Facebook but would love to chat with you x
Thank you very much for your message…..I have just emailed you xxx