Admitting you have IBS to others can be difficult and embarrassing. Vicky Harris, our IBS support group leader in Forest Hill, London, is speaking out to help others with the condition.

This is the first time I have admitted that I have IBS. A few people know I have the condition but they aren’t really aware of what myself and many others experience day to day. So here goes… I spend a lot of time on the toilet! Sometimes six times a day, sometimes seven. I worry about leaving the house, I worry about travelling, I worry I’ll get caught out. Again.

I stress that others will notice how long I spend on the toilet. I stress about the smells I leave behind. I stress that other people know. I stress that other people judge me.

My stomach swells uncontrollably, sometimes for weeks at a time. I get asked if I’m pregnant. I get asked when I’m due or if it’s my first. I lie and say, ‘yes’. I struggle to breathe. I struggle to walk. I struggle to function.

Distention is when your diaphragm loosens and your organs fall forward. I live in pain. I’m often nauseous, my body temperature rises, and I feel lightheaded and can’t move. I throw up because I’m too tired, too stressed, ate something bad, who knows?

I burp often, a deep, vibrating belch that shakes my entire body. If I do this lying down I vomit and choke.

IBS dictates what I eat, what I drink, what I wear, what career I choose. I have to sleep a lot to not be ill. I stress if I can’t sleep enough, but sometimes I’m in too much pain to sleep properly. Sometimes I’ll sleep well but I’m ill regardless. Sometimes I wish it would end.

I live off paracetamol, antiemetics, antispasmodics and amitryptelene. Every day I swallow numerous pills to try and make me better. They ease the pain but it doesn’t go.

Travelling is tough. It’s stressful, busy and standing is painful, gravity makes the distention more painful. I have an ‘Offer Me a Seat’ badge but I feel too judged to use it.

I live in pain every day — stabs as my gut moves, aches as my organs fall and my stomach stretches, headaches and muscle ache from exhaustion, lungs screaming as I try to climb stairs. Everyone around me sacrifices a lot: my family, my friends, my partner, myself.

I feel angry, I feel depressed, I feel empty, I feel helpless, I feel useless, I feel sad, I feel anxious, I feel lonely, I feel incapable, I feel exhausted.

Yet in all of this pain and sadness is a realisation of something I am proud of myself for; I am resilient, I am strong, and I do not surrender. For that at least, I am proud of my body, the one that doesn’t quite work in the most efficient way and seems weak but proves every day that it has strength.

I’ve lived with IBS since I was a child, with the condition evolving and changing throughout my adult life. Having been told to “just live with it” several times by varying medical professions, I did so until I was so weak I could not function and was suicidal. That was three years ago.

Back then I was a camera assistant in the film industry which, like many industries, has long hours, six day weeks, changeable hours, no structure or routine. This is a gut’s worst nightmare and boy did mine make that clear. For two years my IBS went from having manageable symptoms to the extreme. For weeks I could not eat anything. If I did, I vomited straight away. In just a few weeks I lost a stone. I felt awful: depressed, lonely and isolated. I could barely work. I was limp and weak.

After 10 weeks I finally booked a private gastroenterologist appointment. The doctor assured me that it was not just in my head and that there were things that could be done. He told me I no longer needed to suffer in silence. That was exactly what I needed to hear. Relief ran through me and that is where my journey to understanding my condition began.

Although it took several months and a lot of persuading of a very unhelpful GP I finally met my gastroenterologist. Together I was tested for everything it could possibly be. As much as you don’t want something sinister, to say I was disappointed at the diagnosis of IBS, was an understatement. The reality of IBS is quite depressing. There is no cure or understanding of the condition and the preconceptions of society towards it are rather poor. It is not an illness that is taken seriously.

During the time before I was properly diagnosed, I turned to the internet. I found The IBS Network. Finally, for the first time I didn’t feel alone. There are many people, all over the globe, who are searching for answers and understanding of IBS. This is why I am starting a support group in my area, to connect with others who are suffering just as I am. I want people with IBS to know that they are not alone and that none of us need to suffer in silence.