"I didn't get a migraine diagnosis until I was seven or eight. Before that, I saw a lot of doctors who hesitated to label it because I was so young. When I finally got an answer, they told me, 'There's nothing we can do - just learn to live with it.'"
Beth's health struggles began at just four years old when she experienced her first migraine. Now diagnosed with Chronic Migraine—one of the most prevalent yet misunderstood neurological disorders, affecting approximately 1 billion people worldwide—Beth has faced a long and challenging journey.
"At that age, you don't connect a headache with nausea or dizziness," Beth recalls, early in her interview. Although the symptoms were far more severe than a typical headache, she was too young to articulate the intensity of her pain or link the accompanying symptoms together.
Chronic migraine, characterised by headaches occurring on 15 or more days per month, with at least eight involving specific migraine symptoms such as throbbing pain, light sensitivity, and nausea, became commonplace in Beth's childhood for years before any doctor finally took notice.
"Despite the symptoms, I wasn't diagnosed until I was seven or eight," Beth explains.
Unfortunately, Beth describes her early interactions with doctors as largely dismissive. "They just told me to live with it," she says. This reluctance to diagnose migraines, or any chronic condition, in children is not uncommon. While doctors may be cautious about labelling symptoms in young patients when the root cause isn't immediately apparent, this approach can leave children like Beth suffering in silence without access to treatment or relief.
As Beth's migraines worsened, her symptoms became increasingly disruptive. Due to a lack of awareness, the complexity of chronic migraine is often underestimated. Far beyond a mere headache, migraines can last for hours or even days, accompanied by throbbing or pulsing pain, visual disturbances (auras), and extreme sensitivity to light and sound.
For Beth, the unpredictability of these episodes has made daily life difficult to manage, overshadowing her goals and ambitions. Even now, Beth continues to endure a high frequency of migraines with few effective treatments available. "I get around five migraines a week," she shares, highlighting just how invasive and relentless the condition is. "Sometimes I have better patches, with only two or three a week, but that's rare." She's identified one clear trigger—extended exposure to sunlight or heat—but this knowledge offers little comfort. With her migraines often unresponsive to medication, Beth faces a constant, exhausting battle with her own body.
"For my joint pain, I didn't go to the doctor for a few years because my family thought it was just aches and pains. I understand why—dismissing those symptoms in a young person is easy. But the first time someone finally took me, the doctor confirmed it wasn't normal."
While migraines have been a constant struggle, they are just one aspect of Beth's health challenges.
Around the age of seven, she began to experience persistent pain that was initially dismissed as "growing pains." As time went on, the symptoms worsened, mainly once her joints started to dislocate or subluxate frequently.
"I did dance and gymnastics because I could extend further," Beth recalls, referencing the extreme flexibility caused by her hypermobility. However, what once seemed like a benefit soon came at a cost, as she describes how her hips often fell "out of place". Interestingly, on the other hand, Beth also highlighted that while the dislocations she experienced were excruciating, they also brought some relief by releasing the built-up tension in her joints.
After several years of this, it wasn't until Beth was around 11 or 12 that she was diagnosed with Hypermobile Ehlers-Danlos Syndrome (EDS). Initially, her symptoms were mistaken for other conditions, and it took several years of discomfort before a physiotherapist finally confirmed the EDS diagnosis. Despite receiving a name for her condition, treatment options were limited. Beth attended group physiotherapy sessions diligently for several years, but the results were frustratingly slow.
"It wasn't making it worse, but it wasn't making it better either," she says, describing the helplessness she felt as her condition showed little improvement.
Beth's frustration grew as she felt abandoned by the medical system, receiving minimal intervention beyond physiotherapy, which failed to offer long-term solutions. By age 16, she gave up on the exercises, recognising that they weren't helping her condition improve.
"Often, when I experience a flare-up with one condition—whether it's my joints or migraines—the other tends to follow suit within a few days. It's a never-ending cycle."
In our interview, Beth described how her flare-ups follow a recognisable pattern. First, her joints seize up, often in the middle of the night, as she wakes in excruciating pain, her whole body stiff and unmovable. She explains how the pain is so intense that simple movements, like walking, become unbearable, with the risk of her joints locking or dislocating at any moment. Beth explains that she had to significantly adjust her lifestyle, avoiding physical activities that could aggravate her condition. But this has meant missing out on many opportunities and letting go of certain hobbies, such as dancing and gymnastics.
Due to a lack of treatment options, Beth has had to find her own ways to manage her condition. One of the most helpful tools has been a walking stick, which she initially didn't realise would make such a difference.
"I didn't realise the amount of pressure it could take off," she says, explaining how minor adjustments have helped her better navigate daily life. Though the challenges persist, these adaptations have made her condition more manageable, offering a measure of control in an otherwise unpredictable journey.
"With the joint pain, my mind is still somewhat clear. But with a migraine, it feels like my whole body is being affected. Especially when the pain is behind my eyes, I feel like I'm somewhere else, not fully present."
To find out more about Beths Conditions, click the links below:
Chronic Migraine
Chronic migraine is a condition with headaches on 15+ days per month, including at least 8 days of migraine symptoms like throbbing pain, light sensitivity, and nausea. It disrupts daily life, and treatment includes medication and lifestyle changes.
Hypermobile Ehlers-Danlos Syndrome
For Beth, the physical pain of her conditions is just one part of the challenge. Throughout our conversation, she also highlights how the emotional toll has been equally hard to bear.
"When you've lived with pain for years, you get used to it," she reflects. "But the hardest part is knowing there are things I need to do, and I just can't do them. That's what gets to me."
Beth's health challenges force her to live cautiously, constantly managing symptoms and limiting her activities. Yet beyond the physical strain, one of the toughest battles has been helping others understand the daily struggles she faces. Her journey hasn't just been about coping with the pain of migraines, joint dislocations, and other symptoms; it's also been about finding empathy and understanding from those around her.
"The doctors weren't always on my side, and that made it harder for family and friends to believe what I was going through," she says. Without validation from medical professionals, convincing others of her pain became an uphill battle.
"I think because it started at such a young age, you hold onto the hope that it will eventually go away, and you have people around - doctors, family - saying it'll pass. But after nineteen years, the hardest part was truly accepting that it wasn't going to change."
In recent years, Beth has been fortunate to find more supportive people. Her best friend has become a significant source of comfort. "She's great. She's always trying to find little things that can help me, or she'll come over if I need a break," Beth says gratefully.
While Beth now enjoys the support of friends who understand her needs and don't mind if she has to cancel plans or leave early, this wasn't the case. "If I take it back two years, the people around me had no clue," she shares. Those friendships eventually faded, and as Beth moved forward, she found people who were more supportive and understanding.
Her current relationship is another testament to the progress she's made. "My boyfriend now also has a disability, so it works really well because he understands the constant pain. He's always there for me," Beth says.
Even with a stronger support system in place, not everyone fully grasps the extent of her conditions. However, Beth recognises the progress. "Everyone's come a long way from where we were!"
Online communities have also been a lifeline for Beth, especially during the most challenging times of her health journey. "Because it started so young and no one around me understood, I went straight to my phone," she explains. Instagram, in particular, provided her with a sense of comfort, where she discovered others facing similar struggles. "At first, it was just the migraines, and I found loads of Instagram accounts and communities. I didn't really talk to anyone—I just watched—but it was nice to know I wasn't alone."
"It's just frustrating because the doctors don't want to cooperate every time you go for a diagnosis."
As her health challenges grew, Beth became more actively involved in these online spaces, particularly while seeking a diagnosis for either multiple sclerosis (MS) or functional neurological disorder (FND).
She says, "In the past year, I've found quite a few people dealing with similar issues, and it's just nice to have that understanding and compassion from people who truly get it."
In January 2023, Beth noticed that she was experiencing numbness, which, in her long battle with multiple chronic health conditions, was something new. Unsure whether it was related to her existing conditions, she confided in a former teacher who had supported her through previous mental health struggles.
One day, he pulled up the NHS website and asked Beth to read through the MS symptoms. "He didn't tell me what it was for, just asked how many of those symptoms I had," Beth recalls. "I said, 'All of them.'" Consequently, she decided to see a doctor but immediately encountered many of the same obstacles she had faced before.
It's no surprise, however, that the journey to diagnosis was far from smooth. It took nearly a year—until December 2023—before she could see a specialist. In the meantime, her symptoms worsened, particularly during a stressful period when, sadly, one of her best friend passed away, and she was sitting for her A-level exams.
"From April to August, my symptoms were out of control," Beth says, recalling how overwhelming the combination of stress, migraines, and EDS symptoms became.
When she finally saw a neurologist, Beth was prepared to advocate for herself. Despite coming in with a list of symptoms, the neurologist was dismissive after a basic reflex test.
"He tapped my knee, and when it reacted as expected, he said, 'You don't have MS,'" Beth recalls, her frustration still palpable and understandable. "I told him, 'Just because it's not flaring up today doesn't mean it won't in two days.'"
Overwhelmed by anger and exhaustion, Beth broke down, "I told him, 'This is every day for me. It's stopping me from living a normal life.'"
Her persistence paid off, and the neurologist finally agreed to schedule an MRI. However, just days before the scan, Beth received unexpected news: she was pregnant.
"I always wanted to have kids young, but I never thought I'd get there due to my mental health struggles and my pain. But here I am!"
Beth's pregnancy has been Beth's carefully planned decision and an unexpectedly enlightening journey. She and her partner, both managing serious chronic health conditions, believed that starting a family sooner rather than later was the best option for them.
"We made this choice because"e of our health," Beth explains. "In an ideal world, I'd like to have three or four children, but we had to face the reality of our situation. We expect our health to decline over the next few years, so we knew we couldn't wait. Even having couldn't now, there's no guarantee my body could handle another pregnancy in five years."
After the challenges of the past few years—managing her health problems and coping with the loss of her best friend—Beth describes the news of her pregnancy as nothing short of a miracle. Having been open about her struggles with mental health, she shares how this has given her a renewed sense of purpose.
During her interview back in April 2024, Beth was 17 weeks pregnant and beginning to find relief in the second trimester. While her health will always present difficulties, the prospect of motherhood has brought a profound sense of hope and fulfilment to Beth's life.
In September 2024, Beth announced the birth of her healthy, beautiful baby girl. Here at A Note of Hope, we couldn't be more thrilled for her and her partner as they embark on this exciting new chapter.
For Beth, accepting her chronic health conditions has been a long and challenging journey. She describes how she spent many years clinging to the hope that things might improve, something anyone with a long-term health condition will understand is complicated to come to terms with emotionally. However, at such a young age, Beth also struggled with feelings of isolation, especially as many of her peers couldn't grasp what she was going through.
She explains, "There's no one around you that's in the same boat, and a lot of people your age just don't get it. But once you accept it, you can start helping the people around you accept it too."
"It might be a bit daft, but watching telly comforts me. I love shows like Loose Women and Coronation Street. They may seem like small things, but they consistently bring me joy and make a difference in my everyday life."
Beth has found that finding joy in the little things has been her lifeline, including watching her favourite TV shows. However, she has still achieved some big things despite her condition, such as travelling to Africa to volunteer with disadvantaged children.
"One of the biggest milestones for me was when I went to Africa the summer I turned 18. I travelled alone, which was a huge deal at the time as I had just become an adult," Beth recalls, "I went with a volunteer program to teach young children, and it really opened my eyes. It was a completely different world, pushing me out of my comfort zone in a way I had never experienced before."
For Beth, that trip represented much more than just volunteering abroad; it was a defining moment of independence and personal growth. It showed her that despite her health problems, she could do big things!
Now, in the early days of motherhood, Beth highlights how her pregnancy journey has given her a new sense of strength and hope that she once thought would always be unreachable. Looking back on some of the darkest times of her journey, she wishes to reassure her younger self: "Even on the hardest days, you'll come out the other side. It doesn't get easier, but the overwhelming feeling becomes less over time."
As we conclude the interview, Beth reflects on her growth journey. From battling physical and mental health struggles to now embracing life as a new mum, she shares a hopeful message in which she not only speaks to her past self but also to anyone struggling to find light in the darkness of their health journey. "I never thought I'd make it to where I am today because of my struggles with my mental and physical health...But here I am!"
Thank you Beth for sharing your inspiring story for the 'A Note of Hope' project.
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