Welcome to another edition of our blog posts. This week we are amplifying the voice of Steph, a Spoonie Mum. You can read Steph's story below, she talks about why diagnosis and advocacy is so important.
I’m Steph, I’m a thirty-two-year-old mum of one with another on the way. I love Dr Martin boots, pins, and books. I’m known for being sweary and oversharing. To the outside world, I look like any other healthy person, except I’m not healthy.
I have several illnesses that impact my life and my ability to function and parent daily.
From my early teens, I have battled with my mental health, later suffering from reoccurring migraines and chronic pain, the latter requiring several surgical investigations.
In my twenties, I was finally diagnosed with PMDD, (Premenstrual Dysphoric Disorder) a severe mood disorder directly linked to hormone changes during the menstrual cycle causing mood swings, anxiety, depression, migraines, and fatigue. PMDD has massively impacted my relationships, my work, and my studies over the years. It’s an incurable illness that requires combination treatments such as antidepressant medication and contraceptives as well as diet and lifestyle.
My first daughter was born in 2016 and it was after her birth that I was finally diagnosed with Fibromyalgia. The aforementioned chronic pain was no doubt a huge contributing factor along with chronic migraine, my symptoms hit a crescendo and I was suffering. It took a lot of diarising my symptoms and many conversations with my GP before I was referred to a rheumatologist who confirmed the diagnosis
Why getting a diagnosis can help.
Fibromyalgia syndrome or FMS is a chronic incurable condition causing widespread extreme pain all over the body and profound fatigue. Living with FMS has impacted every aspect of my life I’ve lost jobs from time off sick and I spend many days a month in bed unable to function, meaning my ability to parent well and my relationships with my family are often affected as a direct result of my illness. I still suffer from severe and chronic migraine leaving me bedridden for days at a time and flare-ups in fibromyalgia symptoms usually occur alongside. The thing about pain is, it ages you. Whether physical or mental, it grinds you down, it sucks the joy from your life and makes you bitter. Acceptance is a nice word, but nobody really accepts being in pain every day. We are born fighters, naturally trying to recover, to fight our way back to better health and happier times. Yet so often we feel like giving up.
Every day is a mystery, you never know how you’re going to feel from one day to the next and it can greatly affect my quality of life, any plans I make, and my mental health.
Since diagnosis I have spent a lot of time figuring out what works for me, it requires a lot of trial and error and listening to my body. Again a combination of medication, holistic therapies, and lifestyle changes are required to manage all of my symptoms.
It’s not been an easy road, but diagnosis ensures I can get the right support. Many people I speak to say that gaining a diagnosis has helped their experiences feel validated, something I very much relate to.
Why is advocacy important?
Living with chronic health conditions can be a lonely struggle and I’ve spent a lot of time in recent years trying to promote honest and positive advocacy for other spoonies and persons living with chronic illness, to ensure we all feel that little bit less alone.
I believe in the power of awareness, spreading the word enables us to have honest conversations with employers, medical professionals, and loved ones. It provides safe spaces for sufferers to open up about how their illness impacts them.
As a mum, I already have a hard job, but parenting with health issues of any kind can make you feel as though you’re not doing enough. I often struggle with guilt as a result of spending a lot of time in bed. I worry that my daughter will miss out on things because of my illness.
However I am confident that I do my very best, and though hard, there are good days, and when they come we have to cherish them. I’m lucky I have great support from my husband and we tackle these challenges together.
There is no cure for any of my illnesses, but finding things that help, talking to others who understand, and raising awareness, gives me hope for a better future.