Today’s Spoonie Diaries is been taken over by the wonderful Abbie Stapleton who has a passion for living cheerfully with a chronic illness. I highly recommend you check out Abbie’s instagram and blog after reading her interview because it is GORGEOUS.
I love Abbie’s outlook on life and how she takes on life with endometriosis and fibromyalgia – two very invisible illnesses which really aren’t understood enough!
Over to Abbie…
WHAT IS YOUR CHRONIC ILLNESS AND HOW DID YOU GET YOUR DIAGNOSIS?
I was diagnosed with Endometriosis in May 2019 and then Fibromyalgia in June 2019.
I received my diagnosis of Endometriosis through an MRI scan from a gynaecologist.
Usually, Endometriosis doesn’t show on any scans and you most likely will need laparoscopic surgery to diagnose it, however, I had very severe Endometriosis, which just happened to be visible on the MRI scan.
My Fibromyalgia was diagnosed by my GP after having many tests done and meetings with my GP to discuss symptoms.
There is also quite a large link between women with Endometriosis and Fibromyalgia, hence why my diagnosis for Fibromyalgia was reasonably quick.
WHAT WAS YOUR INITIAL REACTION TO HEARING YOUR DIAGNOSIS?
With my Endometriosis diagnosis I was completely overwhelmed but hugely relieved.
I was told by many doctors and gynaecologists that nothing was wrong with me and I “didn’t have severe endometriosis”, and so I had talked myself into believing nothing would show up on my MRI scan, despite the horrendous pain I was in.
With my Fibromyalgia diagnosis, again I was relieved to have a diagnosis, but very scared as I didn’t know what this would entail for my life and I felt very alone, with minimal support.
HOW MUCH DID YOU KNOW ABOUT YOUR CHRONIC ILLNESS BEFORE YOU WERE DIAGNOSED? WHAT WAS YOUR INITIAL REACTION?
I had been researching and learning about Endometriosis for a good 6 months before I was actually diagnosed, because I just had a feeling that I did have it. So I felt like I was quite clued up about what treatment and surgical options there were and how I could attempt to manage it throughout my life.
On the other hand, I felt completely differently about Fibromyalgia. I didn’t know much about it when I was diagnosed, other than it is widespread pain. I had no idea that there were so many different types of pain or what the other symptoms of fibro were. I felt completely out of my depth and very worried about how to manage it.
WHAT IS ONE THING YOU’VE LEARNT FROM BEING CHRONICALLY ILL?
The biggest thing that I’ve learnt from being chronically ill is how strong I am- I’ve been through endless tests and procedures, things that I couldn’t have ever imagined myself going through a few years ago.
I’ve faced so many battles (not just physical), yet I’m still standing, I’m getting by and doing okay for myself. I’ve also learnt just how grateful I am for my body, it battles for me every day! I’ve learnt to love my scars and look at them as a reminder of the things I got through and survived.
HOW DID YOU MAKE THE DECISION TO OPENLY DISCUSS YOUR DIAGNOSIS AND JOURNEY BEING CHRONICALLY ILL? WAS IT AN EASY DECISION TO MAKE?
I decided to start discussing my diagnosis and chronic illness online after going through so many battles to get my diagnosis of Endometriosis. I didn’t want to mope around everyday, especially as I wasn’t able to work.
I wanted to do something, help people and provide an environment where it’s okay to talk about taboo topics such as periods, pelvic pain, vaginas and bowel movements.
It wasn’t an easy decision to make as I worried about what people would think or whether I wanted to share such personal details of my life, but I knew if I could help just one person, it would be worth it!
HOW HAS BEING CHRONICALLY ILL AFFECTED YOUR LIFE? HAVE YOU MADE MAJOR CHANGES?
It’s affected nearly every aspect of my life! When I became chronically ill, I felt like I lost my identity and the person I was. I ended up losing my job as a nurse, which I loved.
Financially it became difficult to manage, I struggled to leave the house, I couldn’t socialise with my friends and I couldn’t get out to do the things I loved.
However, it’s also affected my life positively- I’ve met some of the most incredible chronic illness warriors through social media and from support groups, I’ve learnt to love myself and my body just for WHO I AM, not based on my achievements or job and I’ve ignited creativity, new dreams and vision for my life!
IF YOU COULD GIVE ONE PIECE OF ADVICE TO SOMEONE WHO HAS BEEN NEWLY DIAGNOSED, WHAT WOULD YOU TELL THEM?
Keep fighting. Having a chronic illness, especially one that isn’t properly understood, can be frustrating when you seek medical help. Learn about your illness and be informed. Be ready to advocate for yourselves and don’t be pushed into making a decision that is not right for YOU.
DO YOU THINK YOUR PHYSICAL HEALTH HAS IMPACTED YOUR MENTAL HEALTH? HAVE YOU EVER SOUGHT HELP FOR IT AND DO YOU HAVE ANY COPING MECHANISMS?
Yes, at first I didn’t believe that there would be a correlation but for me I can now see that my mental health really declined when I became physically unwell.
I found that my anxiety, particularly social and health anxiety spiralled and I ended up not leaving my house out of fear for a good few months.
Thankfully I was able to seek some counselling through my work at the time and then I went on to have CBT from the NHS, which I found incredibly helpful. I came away with some really great coping mechanisms, one of them being the 5,4,3,2,1 technique. This is where you focus deeply on each of the senses, for example: 5 things you can see, 4 things you can hear, 3 things you can touch, 2 things you can smell, 1 thing you can taste. It really does help you divert away from the anxiety or panic attack in the moment.
But also journaling in the evening about my worries and speaking about them with my husband has also been so helpful.
WHAT DO YOU WISH YOUR FRIENDS AND FAMILY KNEW/UNDERSTOOD ABOUT YOUR ILLNESS/DISABILITY?
How debilitating fatigue can be- that it’s not just being tired and needing a little nap. It’s crippling exhaustion which causes your body to feel like it’s completely falling apart, it’s the inability to walk up the stairs or get yourself dressed.
FINALLY, WHAT DOES CHRONICALLY LIVING MEAN TO YOU? DO YOU HAVE ANY ADVICE FOR READERS GOING THROUGH SIMILAR THINGS?
It means to me that despite having a chronic illness, we still deserve and can live our lives, in whatever way that looks like for us.
Whether it be advocating online from our beds or going out to work. Our chronic illnesses may be a part of us, but they do not define us.
My advice would be to involve yourselves and engage in the chronic illness community (online, social media, physical support groups, etc) talk to others about your chronic illnesses, educate and be a part of a wonderful, strong and empowering bunch of people!
A massive thank you to Abbie for sharing your story and taking over the spoonie diaries!! Don’t forget to go check out Abbie’s Instagram and her blog, Cheerfully Live. Do you want to be featured in The Spoonie Diaries? Send me an email at hello@ktmy.co.uk
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