Karen Parson’s Diagnosis Nightmare
- carolineblake-syme
- May 8
- 6 min read
Karen Parsons has been a member of The Brightwell Community for many years, originally joining the old Centre in Nailsea in 2005.
Karen has wanted to share the story of her very challenging diagnosis journey, that has spanned over 40 years, in the hope that it may help others going through a similar experience firstly to know they are not alone, and not to lose hope and secondly to empower others to find their voice and advocate for their truth.
The way that Karen was treated over many years is truly shocking, but her journey is a modern-day David and Goliath story. An account of how one very brave and determined lady took on the establishment to overcome years of prejudice and misdiagnosis.
Karen who is now 60 had a distressing start in life when she lost her Mother at only six years of age. Nobody explained to her what had happened to her Mum, just that she was no longer around. This was followed by an very challenging and unhappy childhood which had a lasting impact on her. This period was used as an excuse for “psychosomatic” symptoms by more than one doctor over the period of her illnesses!
At a young age, Karen had episodes when she was unable to walk, had headaches, balance issues, sight problems and struggled academically. She was able to bounce back from these episodes and more or less carry on the same as other teenagers.
Age 21, she fell pregnant with her first child and didn’t have a great pregnancy and some of the symptoms reappeared. She was diagnosed with preeclampsia and had to have a c-section and noticed that recovery following her daughter’s birth was very slow, which was put down to the anesthetic.
Unfortunately, she then suffered with post-natal depression, but not realising what this was at the time, she didn’t seek any help. Symptoms following her second baby were not as severe for Karen.
Aged 38, Karen’s health rapidly declined and she underwent a number of significant operations including an appendectomy and a hysterectomy. Unbeknown to anyone at that time, every time anesthesia was used, it was causing Karen more and more harm. These procedures resulted in loss of speech, reduced vision, hearing loss and reduced mobility. Karen had to stop working at this point.
Despite numerous scans, both private and NHS consultations Karen was repeatedly told that there was nothing physically wrong with her and that her symptoms were psychosomatic. At one time, when her mobility was so affected that she was not able to walk, she was told that, there was no reason for this and that she should “just walk”.
Karen’s sister had come across the Therapy Centre in Nailsea and suggested to Karen that she gave them a call. Karen took what felt like a huge step at the time for fear of being disbelieved and ultimately disappointed. In fact, she says it was the total opposite, “I was understood and supported for the first time in a long while” and she was able to commence various therapies to help her increasingly numerous symptoms.
By this point she had seen neurologists at the Bristol Royal Infirmary and Frenchay Hospital and continued to feel that no one was listening to her and taking her symptoms seriously, she felt that several of the Consultants were rather confrontational. Eventually, Karen was diagnosed with a Functional Neurological Disorder (FND) with no treatment plan.
Over the years following diagnosis, Karen’s symptoms continued to worsen including the very upsetting condition of incontinence. Even after very invasive tests that proved Karen’s bladder was not working at all, she was still not receiving any effective treatment and was pushed from pillar to post, without any positive solutions.
Throughout this ordeal, Karen was supported in particular by her sister and her children as well as by the Centre staff and volunteers.
By 2020, despite the situation with her bladder and bowel becoming extreme, increased fatigue and mobility problems, Karen carried on with her own research and investigations and was convinced her symptoms were not associated with FND.
She was referred to a Specialist in Urology and Neurology and was put through a number of intrusive and invasive tests. She was told that she had Fowler’s Syndrome, which results in the inability to pass urine. Again, there was no joined up thinking and all her other symptoms were ignored.
Karen kept insisting that her symptoms were wider than her latest diagnosis, until she was contacted by a different consultant in London. When Karen arrived he watched her walk into his office, he asked about her complexion and skin, what her siblings skin was like and about her flexibility. He also enquired about previous anesthetics she had undergone and said that he thought she had Ehlers-Danlos Syndrome (EDS). This encompasses a group of 13 different genetic conditions that affect the body's connective tissues, which provide support, structure, and stability to various parts of the body.
There is no overall treatment or cure for this collection of health problems, but many of the issues can be dealt with individually.
The more Karen read up on the condition the more sense everything started to make. Despite this confirmed diagnosis there was no apology from any of the previous specialists that Karen had seen, which has made her feel particularly frustrated. Likewise, there has been no recognition for the years of pain and suffering that Karen lived through affecting every aspect of her life. Yet Karen remains, stoic and wants to move forward with her life.
Karen is an amazing craftswoman making beautiful items with paper including all the flower table decorations for her younger sister’s wedding as well as all the department gonks you will see around the Centre. She also makes beautiful craft ornaments for her community of neighbours and to raise money for charity. Over the last 20 years that Karen has been using the Centre she has always been involved in the Summer and Christmas Fairs and fundraising , in whatever way she can for the Charity.
She also has the best comedy timing, even when she is talking about her challenging experiences she makes people around her laugh out loud. Doro, our Brightwell CEO has suggested that Karen should look at doing a stand up comedy course – because she would be amazing at it!. Karen always has time for other members at the Centre.
She hopes that her story may inspire others to advocate for themselves no matter how many times they are misdiagnosed or not listened to. Standing up for yourself should not be seen as “confrontation” or “fighting the system”. Everyone deserves to be heard and feel cared for.
The ultimate goal is that Karen’s experience may help to raise awareness amongst clinicians and broaden the learning of new doctors, to realise that the person in front of them has to be listened to and treated holistically. They are treating the person as a whole not just the condition.
We would like to thank Karen very much for being so open and honest with us in deciding to share her story.
Karen asked us to include some of her thoughts about the Brightwell. These are such warming and heartfelt words…
“In my opinion, from my experience the staff and volunteers become your friends and part of your family. Everyone is always there to help and support you in many ways, physically, emotionally and practically, helping with access to external services, benefits etc. They are the people I laugh with and share stories with and at times a shoulder to cry on.
I always remember when Angela advised me to try oxygen and to use the chamber. I was reluctant as I did not think I would see any improvement. How wrong I was!
Oxygen therapy is a lifeline for me, it helps me manage my fatigue and my cognitive function and energy is always increased after oxygen. My ability to heal from operations is also increased. I always feel better and see a benefit after an oxygen session.
The staff and volunteers in the oxygen suite are always on hand to help you in any way they can, assisting you with access whether that be walking or via a wheelchair. They understand my condition and my individual needs and always support me with this.
I’ve had counselling at the Centre, which was my life saver. It allowed me a safe, secure and comforting place to tell someone my feelings, good or bad and offered me incredible support to overcome issues past and present and help me see a way forward both with my physical condition and with my mental health.
The physiotherapy offered at the centre is excellent and there is a wide choice of options, from one to one appointments through to group exercise classes and sessions. I have used the services in the past and really benefited from them.
The Brightwell Centre is a great place that welcomes all with open arms. It helps me and others make the best of our lives, it offers compassion, support, advice, services and friendship. I can honestly say that the Brightwell Centre, the staff and services available have saved me and it continues to do so”
At The Brightwell, we do not offer medical advice, but we do have an experienced team who can listen and support you including therapists, counsellors and clinics to address chronic and neurological conditions.
Please see the following pages on our website for more help
You can also phone us on 01454 201686 or email hello@thebrightwell.org.uk
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