A story by Lorraine, Across the UK
What challenge does this story focus on?
Perseverance in the face of both physical and mental health challenges. I was a mum to two young children, working in my dream job as an aerobics instructor, when I caught a flu-type bug. This developed into ME (Myalgic Encephalomyelitis) and Fibromyalgia, which involves whole-body pain, . One morning I woke up completely paralysed and had to stop trading. Since then I have faced homelessness multiple times and had to fight a lot of red tape to secure a roof over our head and food on the table.
How has this challenge affected you?
At times I was in despair, and felt I couldn’t carry on. It felt like someone had pulled the rug from under my feet. My health problems were a contributing factor in the breakdown of my marriage. I discovered that people I thought were friends, weren’t. People I hadn’t known were friends, were! For a while I felt worthless and without an identity. The uncertainty of how my health issues would develop was unnerving, as there is no cure for ME currently.
What has or is helping you to move forward with this challenge?
Asking for, and accepting, help has been an important factor in moving forward with my life. Other things that have helped include counselling, volunteering, and getting the right mobility aids. Realising that I am more than just a job title, or a salary amount. Wanting to be here for my children has been a key factor in my resilience. Reading books has helped me stay looking outwards even when I can’t physically get out of my bed or the house. Using my experiences to help other people has been life affirming.
What have you learnt as a result of this challenge?
I am stronger and more resilient than I ever thought possible. Friendship is to be treasured. Regardless of my physicality, I can still contribute positivity within my sphere of influence. Sometimes you have to “get out of your own way” to achieve a good quality of life. If using equipment like a wheelchair means you are able to take your kids to the park, don’t let your pride or ego get in the way of that. There are millions of people worldwide facing similar challenges, be open to learning from their experiences.
How do you use this learning in your life now?
The challenges I faced in getting support, and knowledge I acquired through my own experiences, gave me a business idea. I was unemployable in a regular job, so I created my own!
I founded, and am CEO of, SWAD, a not-for-profit training organisation. We specialise in the area of disability and sex. The majority of the training I offer is delivered virtually, as I am mostly bed bound. We train staff from the healthcare and social services sector, disabled people, and their carers, in a variety of issues around sexual expression. The work I do is influencing changes within organisations like the NHS, in reducing sexual health inequalities faced by people with disabilities.
What positive message would you like the reader to go away with?
Recognise that you may need time to grieve the loss of your “old” life – then take a few deep breaths and start looking to meet your “new” life. It’s okay to ask for, and accept, help from others. Focus on what you CAN do. Surround yourself with positivity and be kind to yourself – it really will work out in the end!