Authors Note: A Message of gratitude from Ellie, Creator and Author of A Note of Hope.
"I am grateful for the opportunity to share Kate's journey. She reached out to us after seeing one of our videos on TikTok and submitted her chronic illness story in writing.
Kate's story is incredibly powerful and highlights the complexities of living with Chronic Pelvic Pain and multiple diagnoses. Her story serves as a reminder of the immense strength and bravery it takes to live with chronic illness. One of the most striking aspects of Kate's story is her honesty about the difficulties of navigating this journey alone. She speaks candidly about the pain of losing those who she thought would be there for her during this difficult time, particularly her ex-husband who she is recently divorced, and the challenges of finding new sources of support and comfort.
Despite the many challenges she has faced, Kate's story is also filled with moments of triumph and joy. In summary, Kate's story is a powerful, moving, and raw account of what it means to live with multiple chronic illnesses." - Ellie Howe, creator and author of 'A Note of Hope.'
Kate's life took an unexpected turn when she was diagnosed with multiple chronic health conditions. For almost a decade now, the impact of Kate's health has reshaped her life in ways that she never could have imagined.
In 2016, Kate was first diagnosed with Ulcerative Colitis, an inflammatory bowel disease primarily affecting the colon and rectum. The inflammation and ulcers (sores) it causes can lead to various symptoms, including abdominal pain, recurring diarrhoea, fatigue, loss of appetite, and weight loss. The severity of symptoms varies between individuals, depending on the extent of inflammation and the severity of the disease. In some cases, the symptoms can be mild and only affect a small area of the colon; in others, they can be severe and affect the entire colon. The condition can also result in complications such as anaemia, dehydration, and inflammation of other organs. For Kate, this diagnosis has significantly impacted her everyday life, and she has had to make significant adjustments to her lifestyle.
Furthermore, in 2019, Kate was diagnosed with two additional conditions - Fibromyalgia and Chronic Fatigue Syndrome.
Fibromyalgia is a chronic condition that causes widespread pain and tenderness in localised areas of the body. It is often accompanied by fatigue, sleep disturbances, and mood disorders. The pain caused by Fibromyalgia can be persistent and debilitating, interfering with a person's daily activities and overall quality of life. Chronic Fatigue Syndrome, on the other hand, is a complex disorder characterised by extreme fatigue. It can be overwhelming and debilitating, making even the simplest of tasks difficult to perform.
These diagnoses have brought a new set of challenges to Kate’s life. Along with her Ulcerative colitis, she now finds herself trapped in a vicious cycle of symptoms where one condition exacerbates the symptoms of the other. Kate shares, "I find that the colitis and fibromyalgia both bounce off one another, so I am constantly in a flare with one or the other."
Dealing with one chronic condition is an overwhelming task in itself, but managing multiple conditions simultaneously can evoke feelings of frustration and helplessness. It requires a great deal of effort, time, and resources to manage medications, treatments, and appointments for each condition. One condition can trigger symptoms of another, and it can be challenging to identify which symptoms are caused by a specific condition. This can lead to confusion and frustration for people trying to manage their symptoms as well as the healthcare professionals who support them.
“My health has got progressively worse over the years and I have now been with multiple chronic health conditions which affect me both physically and mentally."
Unfortunately, Kate's journey has taken yet another challenging turn, as she has recently received a diagnosis of Chronic Pelvic Pain (CPP). This is a complex condition characterised by persistent pain in the pelvic region lasting for at least six months, which can be debilitating and limiting. Kate describes the pain she experiences as severe and all-encompassing, radiating throughout her lower stomach and pelvis area. She adds, "Out of all of my conditions, this is what I find most debilitating."
CPP can stem from a variety of underlying conditions, including endometriosis, pelvic inflammatory disease, irritable bowel syndrome, interstitial cystitis, or musculoskeletal issues. It can also be triggered by events such as surgery or trauma. Furthermore, CPP can be difficult to diagnose and treat, and there is no single cure. Treatment options often include a combination of medications, physical therapy, and cognitive-behavioural therapy. In some cases, surgery may be necessary to alleviate the pain.
“I take strong forms of pain relief to help me cope. Although it takes the edge off, I find it never totally relieves it. I am in pain 24/7."
Kate's experience with multiple chronic conditions showcases the complex and intricate nature of chronic illnesses. She not only has to deal with the challenges of CPP, colitis, fibromyalgia, and chronic fatigue syndrome but also the daunting task of finding effective pain management strategies that address all of her symptoms.
Due to the fragmentation of healthcare services and insufficient resources, pursuing an effective treatment plan can often become a lifelong journey. The intricacies of chronic illnesses require a comprehensive and multidisciplinary approach to care, encompassing a wide range of factors and services. Unfortunately, the current system often falls short of providing such an approach, which can lead to further complications and challenges for those living with chronic conditions.
To find out more about Kate’s diagnoses, click the link below:
Chronic Pelvic Pain (CPP)
Ulcerative Colitis
Fibromyalgia
Chronic Fatigue Syndrome (CFS)
Kate once lived a life full of excitement, with a bustling social circle and two jobs that she juggled effortlessly. However, her life has changed dramatically since her first diagnosis in 2016. Her daily routine now consists of navigating a complex maze of doctor's appointments, medication schedules, and unpredictable symptoms. Kate has been forced to quit her job and many of her hobbies. She struggles daily with a deep sense of loss and grief for the life she once had. It is a sensation all too familiar for many people living with illnesses that have had a significant impact on their quality of life. Every day, Kate faces the harsh reality that she may never wholly regain the vitality and health that she once possessed.
“My biggest challenge is accepting that I’ll never be able to return to the fit, healthy person I once was."
The impact of such conditions can extend beyond just physical health. It can seep into every aspect of one's life, including relationships.
During difficult times, most people instinctively turn to their partners and family for support. However, for Kate, dealing with chronic conditions like colitis, fibromyalgia, chronic fatigue syndrome, and chronic pelvic pain, navigating this new reality is compounded by another life-changing situation.
Kate vulnerably shares how she has recently divorced and separated from her husband because he didn't understand or support her health challenges. Meaning Kate has not only had to cope with the impact of her health but also the emotional distress of losing a partner who was supposed to be there for her in sickness and in health.
Any form of illness can place a significant strain on relationships, leading to misunderstandings, conflicts, and, in some cases, even breakups. For many, the absence of support from partners, family, and friends can inflict wounds more profound than any physical ailment.
The reasons behind such departures are as varied as the illnesses themselves. For instance, some loved ones may struggle to accept the changes that illness brings. Chronic illness can alter a person's personality, energy levels, and overall outlook on life, and this can be difficult for those who have known the person before they became ill. Loved ones may feel that they are caring for a completely different person, which can lead to confusion, frustration, and even resentment.
On the other hand, others may feel overwhelmed and powerless in the face of chronic pain and suffering. They may not know how to provide the required level of support and care, which can lead to feelings of guilt and inadequacy. They may also feel that they are not doing enough to help their loved one, which can be a source of stress and anxiety.
In many cases, the departure of loved ones stems from a fundamental lack of understanding. This is partly because chronic illnesses often don't fit the conventional notions of what being unwell looks like. For instance, someone like Kate may look perfectly healthy on the outside, whilst still struggling with significant pain and discomfort on the inside. This discrepancy between internal experience and outward appearance can lead to misunderstandings and judgments. Even those closest to us may find it difficult to comprehend why their once-vibrant loved one is now struggling to perform even the simplest tasks, especially when there hasn't been any apparent change in their appearance.
The uncomfortable truth is that when people end their friendships or relationships with those who are chronically ill, they continue to move forward with their lives. They will seek new experiences, form new friendships and relationships, and continue to hit significant life milestones without dwelling on the past. Meanwhile, those they have left behind - like Kate - remain trapped in a world of pain, loneliness, and uncertainty, managing their chronic illness alone whilst watching life go on around them.
"I have lost both friends and family members over the years due to a lack of support and understanding of my health. I grieve for my old life and the person I once was every day."
Living day to day with chronic illness is already an immense challenge, but for Kate, the absence of a support network only amplified the burden. She has had to deal with the diagnosis and manage the symptoms on her own, without anyone to help her come to terms with her limitations. The mental toll of living with debilitating health conditions has been significant, but Kate has persevered through it all.
Kate's journey is an inspiring example of strength and resilience in the face of adversity. Reflecting on her experiences, Kate acknowledges her enduring strength by saying, "I am proud of myself and how I have overcome so much trauma over the years.”
By sharing her story with A Note of Hope, Kate hopes to inspire and offer comfort to those navigating similar situations with their health by reminding them that they are not alone.
Kate has found companionship in her two therapy dogs, a pair of Cavalier King Charles Spaniels, who have brought her immeasurable comfort and joy throughout her journey.
"When things are tough, what brings me joy is the companionship of my dogs," Kate shares. "They are a great form of therapy, and just having them by my side calms me and makes me feel a little less lonely." On her better days, she enjoys taking them for walks along the beach. Watching them frolic in the sand and sea brings Kate immense joy and a sense of peace that is hard for her to find elsewhere. "The beach is my happy place," she says, "and I find it so soothing for the mind."
It's clear that Kate's dogs are more than just pets - they are her companions, confidants, and sources of comfort. Whether she's having a good or bad day, they are always there for her, offering unconditional love and support. Kate is grateful for their role in her life and knows she wouldn't be where she is today without them.
In addition to this, Kate also finds pride and fulfilment in her role as a mother. Her journey has not been easy, but she has managed to create a loving and supportive environment for her children on her own whilst grappling with her health issues. Her unwavering dedication to her sons is a testament to her character and commitment to being the best mother she can be. She takes pride in the remarkable young men her sons have become—independent, hardworking, and resilient in their own right.
Furthermore, last year, Kate embarked on a new project by creating a TikTok account to raise awareness about invisible disabilities and chronic health conditions. Kate posts videos that offer support, encouragement, and advice as she talks about her own experiences with chronic illness. She hopes to break down the stigma surrounding invisible disabilities and encourages others to speak out about their struggles. Through her account, Kate is creating a safe space for people with similar challenges to come together to offer each other support and understanding.
Reflecting on her experiences, Kate imparts a message of hope and encouragement to her younger self, where she acknowledges how her experiences have helped shape her into the strong person she is today.
“I would say to my younger self: be careful who you trust in life, as not everyone has a kind heart like yourself. No matter how hard things get, there will be a light at the end of the tunnel, and you will get there, one day at a time. It will make you the strong person you will eventually learn to become.”
Thank you Kate for sharing your inspiring story for the 'A Note of Hope' project.
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