Rebeccah Prince, 33 (UK)
“Always remember you are strong, you are intelligent, you are wise, and you are kind…your illness can take away everything else from you, but it can't take that.” - Rebeccah.
Q: Tell us about you - What health conditions do you live with & how have they affected you?
A: I've been suffering with M.E (Myalgic Encephalomyelitis) for over 15 years now.
It took me several years to get an official diagnosis, and then several more years to see a doctor who understood my condition and was willing to help me. Unfortunately there is a stigma attached to an M.E diagnosis and I have often been made to feel like my illness isn’t real or that I am, in some way, inflicting this upon myself.
My symptoms started when I was only 17, bought on after a bout of glandular fever. Instead of recovering, my health only seemed to deteriorate and I was then diagnosed with M.E. I tried to continue living a ‘normal life’ - at the time, I was studying for my A level exams and I had also just started a part time job.
I didn’t want to accept my illness, but soon it became hard to ignore the constant pain and fatigue I felt.
Eventually I crashed, burned and never recovered. Now my M.E is classed as severe and every day I suffer with symptoms.
My main symptoms are extreme fatigue, brain fog, light, sound and touch sensitivity, insomnia, and chronic widespread pain. I have also developed further issues that affect my bowel and bladder function. Every part of my body is affected.
I am mostly housebound and have to use different aids to help me get around more easily, including a wheelchair, stair lift and crutches. At my worst, I spend approximately 23 hours a day in bed, lying down in semi-darkness.
Find out more about Rebeccah's condition - M.E/ CFS - by clicking the link below:
M.E (Chronic Fatigue Syndrome)
Information from the NHS UK website.
Myalgic Encephalomyelitis, also called chronic fatigue syndrome or M.E/CFS, is a long-term condition with a wide range of symptoms. The most common symtpom is extreme tiredness.
M.E/CFS can affect anyone, including children. It's more common in women, and tends to develop between your mid-20's and mid 40's.
Q: What has been your biggest challenge, or the hardest thing you’ve had to come to terms with, since your diagnosis?
A: It is hard to know that there is not much help for me whilst I am suffering. There is no cure for M.E, and with very little resources put into research, it has been challenging for me to find any answers or help.
There is a huge stigma that comes with a diagnosis of M.E, and I have often been treated poorly because of it. My concerns and symptoms are often dismissed, I have been forced to beg and have often ended up in tears pleading with professionals for help, only to have them turn me away.
Instead of dealing with my symptoms, I have had several professionals suggest to me that I should seek psychological help. I have been left devastated and distraught by the way I have been treated, and it often stops me from seeking out help even when I am in desperate need of it.
This illness has taken from every aspect of my life, there is nothing it does not touch.
The repetitive bleakness of every day, being alone, feeling so unwell and not being able to do anything, is honestly the biggest challenge of my life.
Q: You mentioned you have struggled to be heard by medical professionals. Unfortunately, this is all too common in the chronic illness community and it can often make people feel hopeless. What would you say to somebody in this position right now, who is struggling to have thier voice heard?
I spent a lot of time seeing the same doctors who have made me feel bad or not believed me and it took me a long time to learn that if I was not getting what I needed to, where possible, change to a different doctor. If you do not get on with who you are seeing there is absolutely nothing wrong with stopping seeing them!
Take someone with you to appointments who you trust that can step in to support you and help you explain when you become overwhelmed. There are also lots of incredible charitable organisations out there for so many different conditions with helplines, and I would recommend contacting them for help too. They will be able to provide support by listening to you and can also point you in the right direction for many different things, including medical support.
Most importantly if you are struggling to have your voice heard, please know that you are not alone.
The chronic illness community is amazing and there are so many people out there in similar situations that can relate to you and if you want to reach out there are many online and in-person groups you can join to not only get advice from but more importantly make you feel supported during difficult times.
Q: Despite your challenges, what keeps you going and brings you joy on difficult days?
Over the last 15 years of living with this illness, I have learnt that it is normal to have days where you feel like giving up. But it’s important to remember that they will pass, and you will feel joy and happiness too.
On my better days, just pottering around my bedroom or hopping onto my stair lift to sit downstairs for 10 minutes feels like freedom. I enjoy making cards and doing little craft projects in bed, that I can then send to my friends and family and I find comfort in watching my favourite TV programmes and films (I am a huge fan of period dramas, specifically the Pride and Prejudice TV series!). Even just being well enough to stand and look out of my bedroom window at the sunset brings me joy.
Ever since I was a little girl I have always loved performing, specifically acting, and it has always been my deepest ambition to become an actress. With my health being so poor, I can only imagine pursuing a career in acting at the moment…but it is that hope, that dream, that ambition, that has kept me persevere through every year I have been unwell.
The one thing I can say about this illness is that it has never taken any of my dreams away!
And even in my darkest and hardest times, there have always been people in my life that have consistently been there - no matter what, no questions asked. The small group of friends who have stuck by my side and those I have gained since becoming severely Ill, (as well as some family members too), are a huge part of what keeps me going.
I live at home with my mother, and she is my main carer but also my closest companion.
Rebeccah with her lovely mum!
The bond we have is so special. She is always there for me and, when I haven’t had the strength, she has been the one to fight for my health and quality of life. It is her care and love that has stopped me from spiraling into a very dark place. Because of her, I remain hopeful that I will recover and be able to live my life fully and joyfully again.
Q: What is an achievement you're most proud of since being diagnosed?
A: Finishing my ‘BA Open’ degree with the open university is my biggest achievement. The memory of receiving my diploma, at the Barbican Theatre in London (somewhere special to me because of my love of acting!) fills me with so much pride.
It was incredibly challenging, juggling the intense workload alongside my debilitating symptoms. It took over 5 years of hard work, I even dictated some of my essays whilst lying down in a darkened room. But even with my health being so unpredictable, and the demands of the course often taking a toll on my well-being, I was determined that this was something I was going to see through. That I wasn’t going to give up.
And that hard work, it was so worth it. Being on that stage, accepting my diploma and being able to share it with my mum, dad and brother who were in the audience was so unbelievably special to me. It was also amazing to celebrate with everyone and to be congratulated on the stage in front of 100’s of people. I was bursting with happiness!
It made me realise that I am so much more than just my illnesses, and that I can still achieve anything I set my mind to!