As today is World IBD Day, I wanted the Spoonie Diaries to show another IBD patient advocate and all around chronic illness warrior to take over the feature.
Today, we’re talking to Lolly Cooper about living with IBD, Fibromyalgia and her recent diagnosis of interstitial cystitis. I think you’ll really enjoy this one – I just love Lolly’s attitude!
WHAT IS YOUR CHRONIC ILLNESS AND HOW DID YOU GET YOUR DIAGNOSIS?
I have Crohn’s disease, an auto immune condition which effects the bowel. I have a colostomy bag and I suffer with complex perianal fistulas. I was diagnosed via a colonoscopy which was done after I became increasingly unwell, making trips to the loo over 25 times a day. I also have a chronic pain condition called fibromyalgia, and a chronic bladder condition known as interstitial cystitis.
What was your initial reaction to hearing your diagnosis?
I was scared, but equally relived to be able to put a name to what was wrong with me. I didn’t really understand what was being explained to me at the time, or the seriousness of the illness.
How much did you know about your chronic illness before you were diagnosed? What was your initial reaction?
I knew nothing about Crohn’s disease at all and I didn’t have a lot of exposure to, or awareness of, chronic illnesses.
I was completely overwhelmed and terrified. I don’t think I really understood how sick I was, or was going to get.
What is one thing you’ve learnt from being chronically ill?
To be grateful! I don’t take anything for granted anymore. I really treasure the moments that I don’t feel unwell and when my body allows me to do the things I love to do.
How did you make the decision to openly discuss your diagnosis and journey being chronically ill? Was it an easy decision to make?
For the first three years my illness was completely invisible, so opening up and writing about it helped me communicate what was really happening to me.
In 2019 I had my colostomy surgery and this is when I decided to really use my social media as a platform to discuss my illness.
I hated the idea of having to admit or reveal my colostomy as I felt it made it into something shameful, therefore I used my Instagram and blog to openly discuss my surgery and post photos of my bag. I also wanted to raise awareness for young people living with colostomy bags.
How has being chronically ill affected your life? Have you made major changes?
Unfortunately, yes. Over the years I’ve had to cancel lots of trips and travelling due to needing various surgeries which is incredibly frustrating.
I used to love fitness and surfing in particular but issues with my joints, fatigue and regular operations mean that right now this isn’t possible.
I have also had to change my career aspirations to fit around my unstable health, but I now work from home as a freelance copywriter and I love it!
If you could give one piece of advice to someone who has been newly diagnosed, what would you tell them?
Progress isn’t linear. There are ups and downs and a lot of things will feel out of your control. Don’t feel disheartened, just take one day at a time. Keep love in your heart and surround yourself with the people that make you happy. You’ll get there!
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?
Definitely! I manage to keep a brave face on, but the reality is that everyday is a struggle and coming to terms with my uncertain future is difficult. I think looking after your mind is just as important as looking after your body and I regularly see a therapist to help me process things.
What do you wish your friends and family knew/understood about your illness/disability?
I don’t think there is anything I wish they understood. I think they all do their very best to comprehend what I’m going through, and most importantly they listen. I think all I would encourage them to do is take a moment to appreciate the privilege that is a healthy body, and make sure they live their lives to the full.
Finally, what does chronically living mean to you? Do you have any advice for readers going through similar things?
To me it means learning to listen to your body. Take your time, make allowances and be gentle. Don’t be too hard on yourself.
You’re going to have good days, spend a few of these making provisions to care for yourself on the bad days. On the bad days, remember the good days will come back. Reach out, find your support network, and talk – no man is an island after all.
A massive thank you to Lolly for taking over the Spoonie Diaries! Don’t forget to check out her blog, Trust Your Gut! Do you want to be featured in The Spoonie Diaries? Send me an email at hello@ktmy.co.uk
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