For most of us, when we go to the doctor we get an answer. A prescription might be given, a follow up appointment or test might be needed, but for the most part we walk away with a diagnosis.
Only sometimes that isn’t the case.
For a year, Beth was left looking for her answer. Her IBS remained undiagnosed, her symptoms getting worse and impacting her health and mental wellbeing significantly. Even though Beth had always enjoyed cooking and baking, food became an issue and she lost a lot of weight. She struggled to be taken seriously and was often dismissed by health professionals, even though her condition and the pain she felt was serious.
In this interview, Beth opens up about life with IBS in the hope that her story might help someone else in the same situation as her, someone who might be struggling with a lack of diagnosis or has been told their condition is lifelong. At just 21, Beth was gone through a lot, yet she is still thinking of how to make it so others don’t have to experience what she did. Beth herself says she is ‘learning to control my illness and not let it control me’, but to me Beth’s determination to find out her diagnosis shows someone who will not be controlled by anything .
Often we shy away from talking about illnesses, bowel conditions and anything else that makes our life seem any less Instagram perfect, but Beth is taking a stance against that. Proving that it is important to be real, Beth shares her journey this week and I couldn’t be more grateful to her for doing so.
In your own words, can you describe how you came about being diagnosed with IBS?
I became poorly in May 2018 with either a virus or food poisoning. I spoke to several doctors who gave me anti nausea tablets and antacids, telling me that I’d be fine in a few days. I then went on holiday with my boyfriend and his family, but the holiday wasn’t great – it’s awful feeling unwell at home, never mind in a different country.
When we came home, I was still ill so I took myself to A&E. They did blood tests and recommended that I go back to my GP who then referred me to Gastroenteritis for an Endoscopy and a Colonoscopy. I went for these tests, which were far from pleasant, but the results came back negative. I had reached the end of my tether. I was tired all of the time. I mostly had no motivation to do anything, but sometimes I’d get a burst of energy and I would rush around cleaning the house, then be dead to the world for the next couple of days. I stopped eating. The pains I felt in my stomach, which I later realised were hunger pains, were excruciating – I’ve never felt pain like it. I had lost a dramatic amount of weight, I had a serious problem with food, my depression and anxiety were through the roof… I just wanted someone to tell me what was happening to my body.
After a career change that only seemed to make things worse, in March 2019 I took myself back to the doctors. I was referred to a Dietician, who’s exact words were “JUST EAT” – if only it were that simple.
I was then referred for Cognitive Behavioural Therapy. My therapist was lovely and she began Exposure Therapy. She believed that this would help me overcome my fear of food, but it didn’t. She basically told me she believed I had an Eating Disorder and if I wasn’t prepared to get better then therapy wasn’t right for me. I understood this, so we finished our sessions.
I had a month or so where I was in tears most days. I didn’t know what to do with myself anymore, so I changed my doctors. This is when things started to look up.
I booked an appointment, explained all of my symptoms, recalled all the tests I had done and for the first time I felt listened to. The doctor explained to me that she believed I had IBS (Irritable Bowel Syndrome). I was a little apprehensive as this had never been mentioned to me before. I was told “it’s a life long condition” to which I burst into tears. I couldn’t imagine having to live my life this way forever.
What did it feel like to finally have an answer after everything you had gone through?
I wasn’t as relieved as I expected to be. I had been desperate for an answer for so long. I wanted to know what it was, cure it and get back to enjoying my life, but being told I had a “life long condition” put a dampener on things. However I was happy to finally have a diagnosis and to know what was causing my problems was a relief.
Some of the physical effects of your IBS, such as your weight loss, were quite dramatic. How did people react to these changes you were experiencing when there didn’t seem to be a reason why they were happening?
My boyfriend, family and friends were my biggest supports 80% of the time. They believed me when I said “this is not in my head”.
I genuinely can’t thank my boyfriend and his mum enough. They’ve been on this journey with me every single day – I don’t know how they’ve coped with me! They’ve supported me with preparing for every appointment. Granted in the beginning things weren’t easy and when I would go days without eating it would frustrate them, which is understandable, but at the time I didn’t know what else to do. They’ve suggested meal ideas and ways I can make myself feel better, they’ve listened to me go on and on. I’m so grateful for their ongoing support.
My Dad always expressed his concerns regarding my weight loss. He would try advise me on things I should be eating that would be nutritious. He would never get frustrated with me when we spoke about the same thing over and over again. He was always my shoulder to cry on and supported my every decision, even ones he disagreed with. My dad has attended all my big appointments and always been on the other end of the phone as soon as I walk out of the little ones. He’s been there when I’ve needed him most.
I can imagine it was difficult for you to see yourself going through all of these changes and not know why they were happening. How did it feel to be losing so much weight without wanting to?
I had always been a curvy girl and dreamt of being one of the skinny girls you see on Instagram and in magazines, but I was “big boned” as my mum used to say. At the time, I was happy I was losing weight because it made me feel confident… until it came to putting my clothes on. Nothing I owned fit me and that got me down. It got to a point where I was getting a little too skinny and my family would make comments which was upsetting because I hadn’t intentionally lost weight.
After everything you went through with your misdiagnosis and weight loss, your mental health must have really taken a knock. Now you know that you have IBS, how have you rebuilt yourself to a place where you feel more content after everything you have been through?
I’m still in the process of doing this – it comes in waves. Some days I can be in little pain and do things I want to do, whereas other days I don’t get dressed or leave the house. I’m learning that I have to control my IBS and not allow it to control me. I find if I’m having a fairly pain free day, I put my make up on, make myself feel nice and keep busy because I don’t know when the next good day is going to be.
I’ve learnt to accept my body. I can’t change what happened and I can’t cure my condition so I have to accept it, otherwise I’ll be sad for the rest of my life and that’s not how I want to spend my next 60+ years.
Talking openly about how I’m feeling to my boyfriend and family helps me, and them, understand how and why I feel a certain way. I’ve found that being open allows people to advise me on how I can make myself feel better whether that be physically or mentally.
I’ve learnt to allow the bad days because in real life, not everyone has a good day every day. I came off Social Media for a little while because I found looking at what other people my age were doing depressing. This helped me so much. Social Media is a platform where people only express the good in their life, so I’m trying to be more open. I think more people should be like that.
One of the toughest things I imagine from your diagnosis is being told you had a life long condition. What advice would you give to someone who has just been told this and is trying to digest the news?
It was tough. The realisation you will never get “better” is awful. All I can recommend is, research research research. Find what works best for you, accept that just because something worked for someone else, doesn’t mean it’s going to work for you. Ask your GP for as much information as possible. Take your time to come to terms with it. Allow your emotions to take control sometimes – it’s okay to feel sad, angry and frustrated with your body.
One of the main reasons for this interview is to raise awareness of IBS. What is something you wish more people knew about IBS that would help them understand you and others with it?
I wish people realised how common IBS is. Statistics show that two out of 10 people have IBS and symptoms can be displayed at any age, although it is more common for symptoms to be displayed between 20-30. Bowel habits seem to be a taboo subject, yet everyone does it. IBS has many symptoms and no two people’s symptoms are the same. There are 3 main types of IBS: IBS – D (Diarrhea predominant), IBS – C (Constipation predominant) and IBS – M (alternating Diarrhea and Constipation).
I wish people realised that there is no cure. It’s a case of managing your IBS and not letting it manage you. This is not an over night process and it can take a long time to learn your triggers but once you know them, that’s it. That being said, sometimes people’s triggers can change. For example, someone with IBS may be able to eat Baked Beans for 6 months, then suddenly, they get a flare up and not be able to eat them anymore. It’s all trial and error.
I also wished people realise that its not as simple as taking Paracetamol for a headache. It’s the type of pain that makes you want to pass out, cry or curl up into a ball.
How do you think others can support people with IBS?
Just accept it. Although it’s not a physical illness, the pain someone may be in is just as real. Understand when someone has to cancel plans that they aren’t well. Ask if there’s anything you can do for the person – a lot of the time there’s not but the offer will always be welcome. Learn about IBS. It’s not some “fad-diet” and a person can’t just have a “cheat day” as it has consequences that can last for days. It’s going to change a person, it’s going to restrict them on what they can and can’t do, especially in the beginning when they are still learning about it themselves. Be patient.
Your path to a diagnosis was difficult and through these interviews I have realised that this is not an uncommon experience when people are trying to find answers about health issues. What would you say to someone who is struggling to be diagnosed by a medical professional?
DO NOT TURN TO GOOGLE. It will make you believe you have a deadly condition and only have 3 months to live.
Push your doctor to perform every test or see a different doctor to get a different opinion. Keep a food and feelings diary and take it to every appointment with you. Ask for bloods, scans and stool samples. Don’t leave the GP surgery until you feel listened too. In my year of being unwell, I have seen countless GP’s and it took me moving GP to feel finally listened too. I ask myself most days, ‘why didn’t I do it sooner?’
Ask for a referral to the Gastro Department, Therapy, Dietician, whatever it is you feel you need. Don’t allow yourself to be shrugged off with a prescription and sent on your way. I did this for too long and it’s my only regret.
Just don’t give up, you are in charge of your own care.
Self care is something that is really important for everyone, but especially people who have health conditions that impact their lives in a big way. On days where things get tough, what things do you do to promote positive wellbeing?
It’s the small things like having a shower, putting on a face mask and painting my nails that make a difference. When I’m having a bad day, I’m the only one that’s in control of making that day better so I do whatever it takes. I make sure I take my medication, drink water and eat what I can manage. I don’t do anything that is likely to make me feel worse, whether this be leaving the house, attending a social event or doing housework.
Now that you finally have a diagnosis and are learning how to adapt your diet and lifestyle to this condition, how do you feel about your body?
I’m quite happy with the way my body is now. I understand I’m not the healthiest but equally I understand I’m not the sickest person out there either. I’ve learnt to accept it. I have days where I feel self conscious like anyone else does but overall, I’m comfortable.
If you could sum up your outlook on life in one statement, what would it be?
I can’t change what’s happened, but how can I make sure things are better in the future?
To follow Beth on Instagram, click here
To follow Beth on Twitter, click here
I asked Beth for her recommendations on support groups and pages for anyone with IBS.
On Facebook, there are 2 groups I’m in that have made me feel less alone and realise what I was feeling was okay and won’t last forever. It’s a place where I can ask questions and feel no embarrassment as someone is likely to have experienced the same issues as me at some point.
I follow a lady on Instagram who has IBS and is so open about her good and bad times. She has a blog and YouTube filled with recipes that are Gluten Free, Dairy Free and Low FODMAP friendly which has come in handy so many times.
Instagram – @beckyexcell
As for websites, the NHS website has helped me massively.
And the Guts Charity