The Chronic-Ills Blog

I used to say that if I were asked to pluck a word from the dictionary to describe myself, it would be “complex.” After all, that word had followed me my entire life. From a complex medical history—including undifferentiated mixed connective tissue disease, also known as Lupus overlap disease, Antiphospholipid syndrome, and complex PTSD—right down to my Gyneacological history marked by endometriosis, Adenomyosis, and That big C Word scare that ultimately led to a hysterectomy. It seemed fitting.

But today, if I were asked to pick a word, the one I would choose is “Equidistant.”

 At equal distances from two points; balanced between two sides.

Right now, in this moment, I feel stuck. I’m caught somewhere between my past, a past filled with years of pain, struggling with both mental and physical health issues, battling for answers, diagnoses, and most importantly, help.

I’m diagnosed now. I’m medicated, with an array of pharmaceuticals that help, but often come with side effects that can feel worse than the conditions themselves. I am, in many ways, a long way from the years of uncertainty, but at the same time, I feel like I’m still so far from where I want to be.

Every day, I wake up to pain that consumes my whole body. The routine is the same: opening my eyes, dosing myself with medication just to be able to get out of bed. But I have tiny humans who need their mother, and they’re watching me. That drives me to keep going, even on the days when all I want to do is curl up and disappear into the covers.

I want my children to remember me for everything I do for them. For working hard, despite my illness. I want to instill in them the belief that they can achieve anything. But some days, I am so, so tired.

A few months ago, I made the difficult decision to stop my chemotherapy treatment for my lupus. The side effects were too much. Being bed bound, vomiting, losing weight. And as someone who has battled and is recovering from anorexia, this was a dangerous path. There is no cure for my condition. Only “treatments” designed to slow the progression of the disease and prolong the inevitable. But I wanted to be comfortable. I wanted to give my children back their mother, even if that meant relying on medication just to wake up, or using my wheelchair to take them out. If that’s what it takes, then so be it.

Recently, I got engaged to the most incredible man, Darren. He’s been my strength, alongside my children. I used to be embarrassed about using the wheelchair, and while I still have those moments, he sees beyond it. He sees me. There are days when I feel frustrated, when I can’t climb into the soft play tunnels or jump on the trampolines with my kids at the park, but at least now, I can get out of bed. That’s progress.

I have so many goals, so many aspirations for my life. And yet, I often wonder, Why me? Why did I have to be the one to endure this? I made it into university, only to have to leave. Every 9-5 job I’ve had ended in me going off sick. I became so sick and tired, physically and metaphorically, of not being able to make something of my life, so I created my own business. I design personalised products, including weighted memorial bears for parents who have experienced baby loss. I know this pain personally. I’m also working on setting up a donation page to gift these bears to parents who have lost babies. On top of that, I’ve written books about my life—Sincerely Survivor and Wit Happens and now, this blog, documenting my journey!

I couldn’t sit back and let my condition take over. Not when my children are watching me. But I know there are many others out there who share similar experiences. who feel the isolation and hopelessness of living with an invisible illness. My goal is to reach at least one person who feels that same loneliness, to show them that they are not alone. I will be your voice, your shoulder to cry on. I know how easy it is to feel forgotten in the system, to feel like no one listens to you, to feel like there’s no hope.

But that’s where I come in. There’s help. In Wales, we have Llais, a charity that advocates for chronic illness patients, ensuring your medical needs are heard and respected. If you feel like you’re being brushed off by the healthcare system, please reach out. You don’t have to suffer in silence. There’s help out there, and you’re not alone.

Below is a list of resources and helplines that can offer advocacy and support for chronic illness patients across the UK. Please don’t hesitate to reach out,whether for yourself or for someone you care about.

Charities and Helplines for Chronic Illness Patients in the UK

1. Llais (Wales)
A charity that works to ensure chronic illness patients are listened to and have their medical needs addressed.
[Website: http://www.llais.org.uk]
Phone: 0330 220 0500

2. Chronic Illness Support (UK-wide)
A dedicated support network for individuals living with chronic illnesses.
[Website: http://www.chronicillnesssupport.com]
Phone: 0800 689 4903

3. The Lupus Trust (UK-wide)
The Lupus Trust provides information, advice, and support for people living with lupus.
[Website: http://www.lupus.org.uk]
Phone: 0800 800 8000

4. Arthritis Action (UK-wide)
Supporting those living with arthritis and musculoskeletal conditions.
[Website: http://www.arthritisaction.org.uk]
Phone: 020 3781 7120

5. Macmillan Cancer Support (UK-wide)
For anyone affected by cancer, offering emotional support, information, and practical help.
[Website: http://www.macmillan.org.uk]
Phone: 0808 808 00 00

6. SANE (UK-wide)
Mental health charity providing emotional support for those dealing with mental health issues.
[Website: http://www.sane.org.uk]
Phone: 0300 304 7000

7. Mind (UK-wide)
Supporting mental health and wellbeing, offering practical advice for living with mental health conditions.
[Website: http://www.mind.org.uk]
Phone: 0300 123 3393

8. Carers UK (UK-wide)
Support and advice for those caring for someone with a chronic or incurable condition.
[Website: http://www.carersuk.org]
Phone: 0808 808 7777

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I know how it feels to be in the dark, struggling with an invisible illness, unsure of where to turn. But there’s a community of people out there who understand, who are here to support you. Please, don’t give up hope. You are not alone in this fight. We are all in this together.

With all my love,
Sarah
The Chronic-ILLs Blog.