My name is Natalie, and I have been living with this condition for five years. I wasn’t diagnosed until my third year of living with it, when I finally saw the right consultant.

Before that, I had seen countless doctors and consultants, all telling me that there was nothing wrong with my gallbladder or pancreas. Eventually, I found the correct consultant, who was able to piece everything together. He explained that some of my gallbladder problems may be hereditary. Four members of my mum’s family have had their gallbladders removed because they were not functioning correctly. I was also found to have problems with my Sphincter of Oddi valves, which were not working as they should.

These problems have caused constant bloating and horrendous spasms that can literally stop me in my tracks. I have been out walking my dog when the spasms have become so intense that I have had to stop and crouch down just to find some relief. Sometimes all I can do is breathe through the pain, gripping my dog’s lead so tightly that my knuckles turn white. Eventually, the spasm passes, and I can continue my walk and make my way home.

Having people around me who understand makes such a difference. Sometimes, simply knowing that someone else understands is a relief in itself.

Driving can also be incredibly difficult. The pain can travel into my right foot, meaning that even putting pressure on the pedal can trigger or worsen the pain around my pancreas. There have been times when I haven’t been able to park in certain positions because the pain would be too intense to reverse out safely. Instead, I have had to keep driving until I find somewhere I can actually manage to park. At home, the pain can completely cripple me, particularly after eating. Even foods that I have previously eaten without any reaction can suddenly trigger an attack. The spasms can become so severe that I have ended up on my hands and knees, crying because the pain is unbearable. These attacks can last up to an hour.

Although I haven’t had children, I have been told by patients that have become friends that the pain I experience is worse than labour. Living with this level of pain every day is frustrating, exhausting and, at times, humiliating. This is especially difficult when I am at work and have an attack in front of customers or suppliers. Since my Botox treatment stopped, I have also experienced pancreatitis and have had to continue working. Thankfully, I work for my partner, which means I have some flexibility and don’t always have to work for long periods. But I constantly worry that one day I simply won’t be able to work because the pain is so unpredictable. Some days, I just cannot cope. Some days I can manage only a few hours before my body forces me to stop. On other days, I can keep going, but the constant combination of pain and fatigue is exhausting.

I continue to work because l am needed, but also because I want to maintain some of my independence. I refuse to let this illness completely dictate my life. At the same time, I hate how much this condition has changed the way I look and feel. My social life has changed too. I make plans, but sometimes I have to cancel because I am frightened of having an attack while I am out or because I am simply in too much pain. I carry Gaviscon, mints and pain medication with me everywhere I go, hoping they will give me enough relief to get through until I can get home.

I have also had to learn to pace myself every day. I constantly have to prioritise what needs to be done because this illness slows me down so much. The reality is that if I overdo things, I pay for it the following day. Even a small amount of housework can completely finish me off on my worst days.

I am incredibly grateful to have a good support system around me, although itis hard for the people I love to see me at my worst. My partner and my parents don’t always know how to help, but they are always there for me, and I cannot thank them enough.

The only treatment that has given me meaningful relief has been Botox. Having that treatment taken away when it was helping me regain some quality of life has been incredibly difficult and, to me, feels cruel and unnecessary.

I remain hopeful that, by patients and consultants working together and listening to each other, we can find effective and lasting treatments that allow people like me to regain some of the lives we have lost to this condition.