A Mother’s Love: Lauren Keeps Fighting In The Face of Chronic Pain

Meet Lauren, a mother from Essex who faced a life-altering diagnosis of sacrococcygeal teratoma in 2019. In this interview, she shares her experiences of multiple spinal surgeries, revealing the profound impact they've had on her life, and how her Cool Walking Sticks make a difference.

Can you tell us a little bit about yourself and the nature of your disability?

I'm Lauren, a married mother of identical twin boys; I live in Essex and I'm training to be a children's counsellor. In June 2019, I was overcome with terrible lower back pain – I couldn’t walk or sit upright, and it was terrifying. After many MRI scans and intrusive examinations, a pelvic consultant delivered the devastating news that there was a rare tumour found at the base of my spine called a sacrococcygeal teratoma.

How has it affected your daily life both physically and mentally?

At that moment, everything else just fell from my mind and all I could think about were my twin sons, who were only two at the time; I couldn’t leave them without a mother, and I couldn’t fall apart. I needed to stay strong and fight whatever was headed our way. 

Following my first operation, I had only been back a month when I was feeling increasingly unwell, to the point that I could hardly breathe. After an MRI scan, it was discovered that I had an infection from my recently healed wound, and my organs were beginning to shut down. I was booked in for an urgent operation in December 2019 and had another few months of recovery ahead of me. 

By April 2020, I was beginning to feel more like myself again; I was exercising every day, I had finally stopped taking pain medication, and was back at work. However, mentally, I felt like I was constantly looking over my shoulder. It was around this time that I was diagnosed with PTSD from everything that had happened.

After a routine MRI scan in August 2020, my worst nightmare came true – another tumour had been found and I had to go through another major operation. It was incredibly heartbreaking and I was in shock that I was having to go through this all over again.

The second major operation was performed in October 2020 and the recovery was my hardest yet – physically and mentally. A year later I was still on a high amount of pain medication, and struggling with intense exhaustion.

In the last two years, I’ve been under two pain injection procedures. My last procedure was in January 2022 and the weeks following were horrendous; my body was bruised and in excruciating pain, so much so that I was actually vomiting.

I try to focus on the positive and I'm thankful that my experience has allowed me to see life in a different light; I’ve been lucky to see how short life really is and that has allowed me to live life to the fullest. 

Are there any things you've found have helped support you or impacted your mental health in a positive way when it comes to living with a disability?

I decided to quit my job as a PA in London and train as a child therapist. My experience has taught me how so many babies go under the operation to remove an SCT at birth – many do not survive, but the ones that do, usually suffer with chronic pain in their lower back from the surgery. 

It made me think how much the operations and pain has affected me as an adult and I cannot imagine how this must be for children. That alongside learning how important our mental health really is – I think it's time to give back and If I can help one child even, then it will be worth it. 

Although my journey is ongoing, after countless tests, examinations, and appointments since the beginning, I am thankful to be alive. I have found a support group of people who have been through what I have, and parents of children who have or are going through the same. I have been writing a blog about my discovery, surgeries, and recovery to raise awareness of sacrococcygeal teratomas to create a positive out of a scary and life-changing experience. 

What is your biggest struggle living with your disability?

Chronic pain constantly, all day; from the moment I wake up to the moment I fall asleep. Second to that is the exhaustion, not being able to go out for long periods of time, or stand up for long periods of time without being exhausted; this in turn has affected my social life.

What keeps you motivated?

My children. Always.

When did you start using Cool Sticks, and why?

I started using Cool Walking Sticks in Summer 2022 and I wish I had used one sooner!

Do you think Cool Crutches have helped you to move more or walk better?

Yes, becoming disabled in my early thirties meant I really didn't appreciate how important support and comfort would be when choosing a walking stick. I had used cheaper walking sticks in the past and found that I had further back pain. Using cool crutches and really researching how necessary quality is when using a disability aid allowed me to move around with more comfort.

How do businesses like Cool Crutches help the disabled community?

To wear a mobility aid that isn't so clinical and medical allows the disabled community to match colours to their outfits and 'shine' even more. I get so many compliments about my Cool Crutches walking sticks and they are all from abled people; so they feel like more of an accessory now, rather than something that used to make me feel vulnerable and exposed.

If you could have a dream day out with anyone, doing anything, who would it be with and what would you be doing?

Waking up by the coast in Cornwall; a day outdoors at the beach or in the countryside with my husband and boys before enjoying a dinner of Oysters and shellfish. Wrapping up the evening in front of the fireplace, watching a movie as a family or playing board games. I'd then fall asleep listening to the waves. However, a pain free day would be number one!

What's the best advice you've been given?

‘Accept don't expect' or 'Hurt people hurt people’. I'm not religious but the phrase 'God only gives us what we can handle' helped me to fight my illness.

Is there anything in the pipeline you're excited about and would like to share?

I've been writing a blog, since my second major operation in 2020; at first it was just a way for me to get all my feelings down on paper, but since I have had many people reach out to tell me how my blog has helped them overcome their own chronic pain, or allowed them to understand what to expect with their own coccygectomy or major surgery. It's something that I keep up with monthly and try to be as honest and raw as I can about my journey, the fact it's helping other people is just amazing.

We are so thankful to Lauren for sharing, and for all her efforts to provide hope and encouragement to others navigating life after a spinal surgery.

Meet more of the Cool Crutches community…

Fitness to Resilience: Meg Embraces Change with Cool Crutches

The Importance Of Community When Living With A Long-Term Disability With Eliza

Dancing Through Adversity with Sophia Moore

To check out our range of walking sticks and comfortable crutches, click here or click below to shop Lauren's walking sticks.