Lightning doesn’t strike in the same place twice, does it? By that I mean that if you are born with OI, then the chances of you acquiring another health condition out of the blue are pretty slim aren’t they? Those letters that come through the post inviting you for cervical screening (previously known as the smear test) and mammograms, they’re not compulsory are they? Particularly for we OIers for whom such tests may be more uncomfortable and physically difficult than non-disabled people, and who already have enough hospital and GP appointments to go to?
That was my thought process when, following the Covid pandemic, another cervical screening letter arrived. Having procrastinated over the previous one, then recycling it, I was very close to not booking an appointment. However, a little nagging voice in my head led me to ring my GP surgery to speak to a nurse about my anxiety and physical restrictions having the test, which I previously had found painful. Part of me hoped that she’d validate my reasoning that I didn’t need to book one, but that wasn’t the case. Instead, her one-line argument, along with the assurance of extra support and anti-anxiety medication for the day, prompted me to bite the bullet.
“Isn’t it better to face the small discomfort of cervical screening rather than have to go through cancer treatment?”
Thank goodness I did. I dodged a bullet. That test revealed some abnormal cervical cells. A subsequent colposcopy procedure, painless under general anaesthetic, burnt them away. The biopsy they took showed those cells were high grade pre-cancer, meaning that if I’d not had the test or the procedure then those cells could have turned cancerous without me knowing a thing.
Talking about anything to do with boobs and ‘down there’ can feel embarrassing, as can having a procedure. I’m writing this blog post because it’s vital that we have the same screening tests as any other woman, as there’s no such thing as fairness when it comes to health. I hope my story will encourage women with OI to take them and also be empowered to ask for the adjustments they may need to do so.
The NHS system isn’t joined up and the onus, unfortunately, is on you to advocate for yourself. Cervical screening invitations come from a centralised source that doesn’t have information about your disability. It is your right if necessary to ask for a double appointment to give you the time you need; for you to bring someone along for support; and to discuss with the person undertaking the screening beforehand about how the test can be adjusted to suit your body and physicality.
It’s the same for mammograms. My first letter, again from a centralised source, invited me to go for a breast screening in a car park portacabin. They didn’t know I was a wheelchair user. It was only when I phoned to check if the portacabin was wheelchair accessible (it wasn’t) that I was put through to a senior nurse who listened to my requirements and instead invited me to a hospital clinic that has lower scanners especially for wheelchair-using-women. It was tricky to move myself into the positions needed but with a bit of humour and kindness from the all-female staff, I managed it and received a reassuring all clear.
I’d love to live in a more equitable world where having OI means that you’ve used up your ill-health quota and are exempt from developing any other health issues, but sadly that’s not the case. We’re as likely to develop cancer as any other woman. So please go to the screenings when the letter drops on your doorstep. Forewarned is forearmed.
