I’m participating in a social media challenge started by Remember The Girls this week! The aim is to raise awareness of X-linked genetic disorders and specifically to talk about our own experiences of having an X-linked disorder as a woman. I will post 7 blogs throughout this week, with the below themes.
Day Five : My Support System
I am so lucky to have the support system I do. I have a GP who listens to me, takes time to research into my more rare conditions and has a true desire to help with my health. The genetics team at Guy’s hospital and the nephrologists I’ve spoken with have all been a great support too.
My biggest support though comes from my family and friends. I would be lost without my husband. Through the past 7 years when everything started to fall down regarding my health and mobility, his support has never faltered. He’s been my shoulder to cry on when my anxieties got too much to handle alone. He’s physically picked up the load when my body couldn’t take any more pain. He’s managed a confusing, energy-sapping life full of appointments, meetings, worry and fear alongside me and I’m so thankful for that.
My parents have been an outstanding source of support too. From going over painful family history time and time again, holding my hand at scary appointments and getting us safely to and from many, many different hospitals. We couldn’t have done these past years without them.
My extended family and friends have always shown so much empathy and love. In December 2019 they encouraged me to set up fundraising and then rallied together and raised enough money through GoFundMe to enable me to purchase a wonderful lightweight, fold-able electric wheelchair, which has been an absolute life-changer. They are all amazing.
Many people aren’t as lucky as me. Support is such an important thing when going through big life changes. Remember The Girls and other organisations like it are vital to help people feel less alone and help them start navigating their way through their health journey. Connecting with people who are going through similar situations through websites, Facebook groups or other social media platforms brings confidence, knowledge and power to patients who may feel utterly overwhelmed or lost.
If you have or know of someone with an X-linked disorder, please take a look at Remember The Girls social media accounts below.