A former nurse has been diagnosed with six chronic conditions after 10 years of suffering “debilitating” pain that left her “bed-bound and forced to quit her job”.
Abbie Stapleton, 26, who lives in Cambridgeshire, says she has been through hell over the past decade coping with horrific symptoms – but says people often “don’t believe” her pain is real.
Since July 2019, she has been diagnosed with endometriosis, fibromyalgia, costochondritis and interstitial cystitis – causing her everything from chest and bladder, to pelvic and muscle pain.
Meanwhile, postural tachycardia syndrome (PoTS) sees Abbie suffer an abnormal heart rate and she also has trouble passing urine, due to Fowler’s syndrome, which also causes her back and bladder pain.
“Living with chronic illnesses affects every aspect of my life,” Abbie told NeedToKnow.online.
“I’ve gone through long periods of debilitating daily pain. It can leave you feeling so frustrated, anxious and lonely.
“My illnesses are mostly invisible; if you saw me, you wouldn’t think I’m ill, [but] when I’m at my worst, you probably wouldn’t see me out and about.
“Generally, the initial reaction [from people to my conditions] is shock.
“Many people look at me and think – or even say – ‘but you don’t look ill’ or ‘you’re so young’. These comments and reactions can be hard to experience.
“Dealing with chronic illness is hard enough as it is. It doesn’t need to be made harder by being made to feel like we are invisible or not worthy of being believed.”
Abbie says her day-to-day life is “challenging” as fibromyalgia flare ups affect her ability to walk, cook, clean or move her body, while endometriosis can confine her to bed.
During these times, Abbie relies on her husband Ben, 27, to help with most things, including showering.
She said: “Due to my endometriosis, I struggled with painful sex and I really relied on my husband to do a lot of things around the house, so sometimes it felt as if he had become more like my carer than my husband.”
Abbie claims she has also had to deal with doctors not taking her seriously.
The first time she spoke to a GP about her pain, the former nurse says she was asked if she was over-exaggerating and told it would “probably just go away”.
She said: “Being gaslit by medical professionals was awful – so invalidating and traumatising.
“Sometimes I would disclose that I was a nurse, and usually it ended with me being taken more seriously, which shouldn’t be the case.
“We should be listened to as the patient – whether I’m a nurse or not, I know my body best.”
At her most severe point in 2019, Abbie was housebound due to the pain and has since been forced to give up her career – as well as her social life.
Abbie said: “When it was at its worst, my health had an impact on my relationships and friendships, and it severely affected my mental health.
“I had a very limited quality of life during that time.”
Thankfully, Abbie says she has a “great support network of family, friends, my husband and the chronic illness community” who are always on hand to offer emotional support and advice.
In December 2020, Abbie had endometriosis excision surgery, which has made a huge difference to her pain and symptoms.
She has also changed her diet, does weekly exercises and physiotherapy and gets support from a pain team with a regular drug prescription.
Unfortunately, fibromyalgia has no cure – and, although there are options available on the NHS for her other conditions, Abbie is currently focusing on growing her family.
She said: “Thankfully, since having endometriosis excision surgery and working on recovery, I have a much better quality of life and have found a good balance of managing my illnesses and enjoying everything life brings.
“I still experience a level of pain and symptoms every single day and, because my illnesses are dynamic disabilities, it means my pain levels can change not only from day-to-day, but hour-to-hour.”
Abbie, who runs her own photography business called Creative Bloom Studios, is now sharing her story on her Instagram account, @cheerfullylive, to help others who are struggling to get help because people won’t believe them.
She also wants to see better mental health support for patients.
She added: “The fact that we are diagnosed with these long-term, life-altering illnesses without any mental health support is not OK.
“The biggest thing that has helped me cope is integrating myself into the chronic illness community… [I’m] so grateful to have met new friends who have helped me feel like I’m not alone in navigating chronic illness and pain.”
“In fact, the support I got from this community encouraged me to share my own journey and connect with other people who had been through similar experiences.”
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