Don’t Be Ashamed of Your Story, It Can Inspire Others
This is a very special and important post this month; not only is it coming up to six years since Louise kindly brought me on board to be the M.E. Support Ambassador, but it is also an amazing milestone for Louise and all involved in M.E. Support as it turns 20 years old. To start with, I’d like to take it back to basics with a little introduction on who I am and the story behind M.E. Support.
Hello! Welcome to the M.E. Support Blog. I am Rochelle Hanslow and I am very proud to serve as the ambassador for M.E. Support, as well as recently becoming the main contributor to this blog. I was diagnosed with M.E. and Fibromyalgia in 2013 at the age of 24. Since then, I have added quite a few other chronic illnesses to the list, including: Costochondritis, Hypermobility, and Osteoarthritis, which has caused a disc in my back to prolapse and affects the S1 root in my spine, and my asthma has worsened to a point I’m on very strong steroid inhalers and the common cold easily results in pneumonia for me.
I am a mother of two boys, who are currently 5 and 3 years old, and I am lucky enough to have a husband who wholeheartedly supports me and tries his best to understand my illnesses and how they affect me, which is a tall order for someone who has High Functioning Autism. Chronic illness is most definitely a litmus test for any relationships you have and it can at times leave you feeling very alone.
When I was diagnosed, like many, my doctor at the time handed me a diagnosis, while googling Fibromyalgia on her computer, and wished me well. I’ve fought long and hard for neurologists to listen to me, with them telling me they didn’t believe in M.E. and Fibromyalgia and being astounded when I told them we weren’t talking about the Easter Bunny or Santa Claus, we were talking about my life and my health. I was told by a psychiatrist, “Stop doing what you are doing because you have a very good-looking husband who could have anyone he wanted and he won’t stay around much longer if you don’t get a grip of yourself”, and I’ve been judged at every turn for my decision to try and live my life to the best of my abilities. It can leave you in a pit of despair and I have often come out of appointments and sat and cried my eyes out in the car because of things I’ve been told or been made to feel. I scoured the internet when I was diagnosed to find some useful information by someone who actually knew what they were talking about. I wanted reputable information and facts, not someone promising me miracle cures, and thankfully, I found that in Louise Sargent and M.E. Support. Louise has been an amazing support for me and my family: she has brought a lot of knowledge to light on the subject and she has become a very dear friend, which is something I never expected to find on my journey.
M.E. Support is one of the leading websites on Myalgic Encephalomyelitis, providing information, advice and support. M.E. is little-known and often misunderstood but it is an extensive and debilitating neurological disease. Louise started M.E. Support with an article in 2001, M.E. My Story, and the response she got was overwhelming. Without even knowing it, M.E. Support had begun, and over the last 20 years it has been giving people a chance to talk to like-minded people, make connections that can save lives, get valuable information regarding a whole range of things when it comes to chronic illness, and help spread awareness and support. Louise encourages people to write about their journeys for the Articles Index, and to ask questions and share experiences on the M.E. Support Facebook Page, and you can also Contact her for help and advice.
In 2014 I wanted to do more to help the chronic illness community in spreading awareness and understanding and I became an ambassador for an M.E. charity. As part of my work for the charity I started Haggard Hanslow and tried many things to raise funds and awareness, including raffles and planning my own event in a local venue. After a year of hard work, I decided to stop this campaign as it was always the same people sharing and giving to my cause. I didn’t want to stop trying to use my voice and tell my story, and around this time Louise had posted that she was looking for someone to be an ambassador and help her with the website etc. I jumped at the chance: not only was it a brand-new experience for me but I wanted to help Louise who had, at this time, given fifteen years to the M.E. and chronic illness community. I have never regretted my decision to take on this title and I absolutely love writing and reaching out to the community.
Louise has worked tirelessly over the last 20 years for M.E. Support and continues to strive to do more for the chronically ill community; as you can tell by her statement on the Homepage, her passion and drive are still very much alive and kicking, even if she continues to struggle with her own health. The website has recently undergone a complete overhaul and Louise has further plans to make sure she can give as much support and help, with an e-book to accompany the website in the planning stage. You can read more in my Interview with Louise about her life and work with Myalgic Encephalomyelitis.
Louise has funded everything for M.E. Support mostly out of her own pocket; she receives no government funding and only receives a small amount of revenue from companies who want to advertise on the website, or from the M.E. Support Online Shop, which currently has a stock clearance sale. Louise and her team want to do as much as they can to spread awareness and give support, but Louise can’t do this alone, especially after the impact Covid-19 has had on everything. If you are able to fundraise for M.E. Support by selling items you make or holding your own virtual event or are in a position to be able to donate, please see the Donations page for further details.
The internet can be a minefield when it comes to chronic illnesses and it is very rare to find the support and information given by Louise. The “Spoonie” friends I’ve made thanks to the M.E. community and M.E. Support have been invaluable in the past eight years and it is so very important for us all to not only provide solace to other sufferers but to have a place where we can talk openly without judgement, and know there is a support network out there for us. I want to take this opportunity to thank Louise for her work for the M.E. community, for her knowledge, for telling her story and allowing me the honour of using my voice.
Happy 20 years anniversary, here’s to many more!