20 May 2025
A St Albans mum who ran 10 miles a day throughout April to raise awareness of a little-known autoimmune condition which affects her eight-year-old daughter has reflected on her achievements.
Lindsey Brown, 43, was fundraising for three charities which support her daughter Gertie, who has Juvenile Idiopathic Arthritis: CCAA kids with arthritis, Juvenile Arthritis Research and National Rheumatoid Arthritis Society (NRAS)
JIA is an autoimmune and inflammatory condition where the immune system mistakenly attacks healthy joint tissues, leading to persistent joint inflammation, pain, and stiffness.
The exact cause is unknown, but genetic and environmental factors are believed to play a role and its chronic nature means there is no cure.
Lindsey was expecting to experience at fatigue and joint pain while completing the challenge which would at least partially reflect the symptoms of someone with JLA.
She said: “I was hyper aware that running 10 miles a day for 26 days to finish with a marathon was not going to fully replicate the suffering associated with arthritis, but I was hoping it would resonate and I could share these experiences.
“The physical pain did start to align with my understanding of JIA symptoms and there were definitely days where I didn’t want to run. I struggled with an existing knee issue and aching legs and feet from quite early on which never really subsided. This woke me in the night when I tried to move and is similar to our experience with Gertie where, at bedtime, she tunes into her pain as there is little to distract her, which means she struggles to get to sleep or can be woken during the night.
“I also experienced severe blisters which didn’t have time to heal. The impact of these meant that I was not planting my feet in the normal way which caused pain elsewhere in my foot. I associated this with symptoms of JIA where pain and restriction in a joint causes other muscles and joints to compensate which in turn also become painful.”
But Lindsey found that her body adapted to the pain during the course of the month: “During April it became my ‘new normal’ for me to be stiff when I woke up or moved from one position to another and for me to struggle up and down the stairs. Realising my body adjusted was positive for the challenge but hit me hard.
“I’ve always struggled with the concept that Gertie’s normal would be with a level of pain – no parent wants to know that their child is in pain constantly. Knowing Gertie is in pain and I can’t fix it has been the hardest thing for me to bear and I can see how her body has likely got used to the pain, and even when she doesn’t complain, I often know she’s not right.”
As well as the pain, Lindsey said she also experienced overwhelming brain fog and exhaustion.
“I struggled to concentrate, lacked motivation, avoided going out and non-urgent/essential tasks fell by the wayside. At times I existed rather than engaged in life. I find it hard to comprehend how someone with a chronic pain condition manages to parent/care for others/work full time, but they do, and they do because they have to and that is their life.”
Just to add to these challenges, at times Lindsey decided to run with a weighted jacket to simulate how existing joint pain can be exacerbated by additional factors without warning.
“On top of my already aching legs, knees and feet with the jacket I then felt heavy, having to leverage my core muscles even more and encourage my tired body to maintain some form of posture. The fatigue after these runs was significant.”
She also decided to run some of the 10-miles blindfolded to raise awareness of Uveitis, a common symptom of JIA where inflammation of the eye can cause a deterioration in a child’s vision and requires close monitoring and urgent treatment.
“Instinctively I wanted to describe my experience of running blindfolded as ‘eye-opening’. The irony.
“Instead I opted for enlightening, which is also accurate. It made me realise how often we use terms linked to vision – ‘see what I mean’, ‘look at it this way’, ‘keep an eye on’…. I had even joked that I knew the route so well ‘I could run it with my eyes closed’.
“I found a wonderful local running guide, Julianne. a specifically trained volunteer who gives up her time to support visually impaired runners. From the moment I put the blindfold on I was overwhelmed by a sense of vulnerability which never eased. We walked with the blindfold on for about 20 metres before jogging and suddenly I was completely dependent on someone else and my other senses.
“Julianne was reassuring and immediately instilled confidence, despite my racing heart. Her instructions were direct and clear telling me when to pick my feet up, steering me as I needed and explaining potential obstacles – cyclists, dog walkers etc as well as communicating with people around us.
“I was surprised at my awareness of the space around me, recognising when the path widened. My sense of sound increased but not as much as I felt I needed, and I did not notice quieter passers-by, including cyclists, until they were upon us. It may be that my anxiety meant I could not tune into it sufficiently.
“I was shocked that I could guess where we were at a couple of key points, based on subtle changes in the ground and approximate running time. This gave me some comfort in terms of anticipating what was coming but did not make it easier.
Brene Brown says empathy is not just ‘walking in someone else’s shoes’. I came really close with this experience. It was humbling and what it taught me will never leave me. “However, we are all unique. Maybe the same diagnosis but a different path. In order to fully empathise we have to truly listen to each other’s perspectives and to find ways to understand what it’s really like for them walking in their own shoes.”
Throughout the month Lindsey said she focused on the purpose of embarking on the challenge, which helped her overcome the most difficult of times.
“I may have forgotten I needed to make dinner for the kids but I could list the children whose stories I had shared and recollect the details.
“Thinking of them and their experiences was a huge motivator. I was also driven by the reaction of those in the JIA community interacting with my posts – I was speaking for us all and it was resonating. People around me were also engaged. They were thanking me for educating them and there was recognition that this was not just about JIA but about struggles that so many of us face as parents/carers.
“There was also a real sense of support and community. The response to the sponsorship was overwhelming with so many positive messages including from friends of friends, and even strangers who had connected with the story. Many people joined me for part or all of my runs, so I was rarely alone. I organised two group events where over 30 families were represented – totally mindblowing and I am so grateful.
“Parenting a child with daily pain can make you feel extremely helpless, being able to do something meaningful that made an impact is something I will forever appreciate and be proud of.”
Lindsey has already raised more than £6,500 for the three charities, but you can add to the total by visiting https://www.justgiving.com/team/lindsey-gertie-jia
