Lola’s Speech

In November 2023, during our  Kranky Panky Pancreatitis Awareness Campaign, Guts UK gave 16-year-old Lola the opportunity to share her story with a room full of pancreatic specialists. It took guts. This is Lola’s speech.

“About twelve years ago my brother started experiencing stomach pains, he was about three or four. I was five. The pains got worse and worse and my mum and dad took him to hospital and to the doctor again and again. They came back with a different diagnosis every time, none of them urgent. But things kept getting worse. One morning my mum noticed his breathing had changed. We ended up in A&E. Scans showed his left lung had collapsed and he had large collections all over his body. There was so much wrong with him they thought it might be cancer. It took 10 days to get the right diagnosis of pancreatitis. We discovered he had a genetic problem. A SPINK 1 gene.

The same one that I have.

When I started getting sick, I didn’t actually put the clues together. Of course not! I was 9.

But, doctors too, did not get it right. Despite my shoulder pain, stomach pain, particularly after eating, and of course, most notably, the family history of genetic pancreatitis, I was misdiagnosed.  They told me it was Functional Abdominal Pain, and that it was because I was simply too anxious. We said “it looks like pancreatitis”: they said “you’re just anxious”.

Because of this, I remember being in pain at school and not telling teachers because I felt it was ‘my fault’. Of course being told your pain is because of anxiety, only heightens anxiety. I only got worse. I can still feel the impact of the misdiagnosis on my way of thinking, on my interactions with every doctor I’ve ever seen since, and how I explain myself when I’m unwell.

To be honest, writing this reminded me of just how angry I am about this, angry at the doctors who looked past what is now very clear. The hospital that misdiagnosed me acknowledges this, and even teaches my case as an example of what not to do. I still haven’t  worked through the overwhelming feeling of distrust by the medical profession. I’m not there yet.

Unfortunately, our two misdiagnoses do not seem out of the ordinary. This story keeps coming up with other people with pancreatitis, both adults and children. I know the difference that early diagnosis would have made for me and my brother would have been significant. I hope that a better way of diagnosis can be found for us all.

Across many cycles of illness, we discovered that I could be in awful pain without my bloods showing anything. My blood tests (lipase or amylase levels) could be in normal range but I could be in agony. So we had to learn how to judge when to go to A&E, and not be sent back home, because the numbers that the doctors paid attention to hadn’t yet caught up with how sick I was. This usually meant waiting for long periods of frequent acute attacks before we went. I had to be not just bad, but “bad enough”.

The treatment I received once admitted was really one of two options, either we stay at our local hospital, nil by mouth for a week or so, something that only really made me ‘better’ for a month before the cycle continued . Or we get sent to a specialist hospital – for drains and ERCPs, and stents, usually meaning an admission of a month or more.

At this point it was a reflection of multiple cycles of illness building up over time. From my experience, I needed more interventions earlier on, but perhaps this is the genuine limitation of medicine. I guess the question of what can be done is the question that everyone in this room is asking, too.

There is little distinction in hospitals between private and personal. Your room is never only your own, with the necessary in and outs of doctors and nurses. It’s difficult to know when you are safe and can relax. The lack of control is really a staple of the experience of hospital. The lack of control over your own body, your treatment, and your environment. When you are chronically ill this experience gets repeated over and over, sometimes for months at a time.

When my four year old brother was getting better he began to wear superhero costumes and masks for rounds – perhaps to hide himself from the overwhelming presence of doctors. As a teenage girl, I probably couldn’t have gotten away with a mask, but the urge was certainly there. Rounds are overwhelming and can feel dehumanising. There’s nothing normal about a group of unfamiliar adults pulling open the walls of your space and staring at you. Of course, rounds are necessary, and my experience of them is limited to teaching hospitals. I understand the importance of teaching, frankly, that’s why I’m here speaking to you today.

But there is an inherent loss of dignity to it.

One of the things I argued for in my stays in hospital was a separation of treatment and personal space. I argued for procedures to be done in the treatment room, rather than in my small contained area of living. A separation between treatment and comfort became very important for me. After being in hospital for months it is hard to define what is a safe space and what is not.

Something I’ve reflected upon a lot is that, especially for children, the overwhelming power and authority of doctors – sometimes comforting, sometimes not – makes it a difficult environment in which to find our voice.

On a hospital ward doctors seem to have more power and authority than our parents or carers. And that is a lot of power. You are the people who we ask to help and heal us. Therefore, it is important to understand that children often want to please you, not upset you. So we sometimes say the things we think you want to hear. Or try to do the things that make you smile. Many children blame themselves when they are forced by their illness into being a ‘bad patient’.  Or when they are just not getting better. Partly because for a child, somehow your pleasure signals that we are getting better. And that can all be quite a confusing knot for a child to untangle.

I know for me I’ve felt like I let down doctors a lot, doctors have expressed disappointment at me and this has affected me long term. Doctors would talk about my way of communication – or my lack of communication – even my lack of eye contact. Ironic, considering what I am doing at this very moment, with talking to you!

I was the first person to realise it was time for me to have a serious operation – that enough was enough. I had the Puestow procedure in 2021, but it took me researching and reading to convince my parents, and then to bring it up with doctors. The lack of framework became clear in this process – there had never been a long term plan for me. Treatment had only ever been reactive to the acute effects of pancreatitis, and discussions never centred the future.

I know that a lot of pancreatitis patients go home from hospital with very little information about the disease, and very little about the possible options they may find themselves faced with. Many of them go on forums and ask “what does this mean? What happens now? Who should I turn to?”

Another thing I’ve learnt in the last 7 year of my life, is that medicine is not an exact science. But, I do wonder what my life would look like now if someone had stepped in earlier and made a decision that looked at my health as what it is: chronic illness.

It is very difficult to get the mental and emotional support you need at this point. I am on the waiting list to see therapists at mental health services, with an initial diagnosis of PTSD and anxiety. But I’ve been on the list for a year now, and I’ve just been told it might take another four months. My hospital team has a psychologist working alongside them, and this has certainly been helpful, but I know that most patients with pancreatitis don’t receive mental health support. It’s not even suggested for many. It means feelings of abandonment are very common in people like me.

Every area of my life has changed. My education has not looked like that of my peers for the past seven years. My school has been incredibly supportive, but I have been on a reduced timetable for almost three years now. And I have been out of school for prolonged periods of time many times. In the first year of my GCSEs, the year of the Peustow, I had only 18% attendance.

I was very lucky with my school. But as the biggest part of caring for people with chronic conditions has to happen when they have left the ward, I wish things like that weren’t left to chance.

It is difficult to interact with people my age who simply do not understand what my life looks like. I imagine it’s difficult for adults too, I mean no one can truly be expected to understand what someone else’s life can look like. But, as a teenager, in a time known for its angst, I feel more isolated and different than everyone around me. My friends, even the good ones, don’t really know how to talk to me about all this, particularly without the comforting story in which it will all get better. Along with the pain, isolation makes us even more vulnerable to sadness, anxiety and grief. Grief, because at such a young age we have lost the possibility of a normal life.

I don’t know what the future holds for me. I don’t know how this disease will progress.

I ask myself, What else might be heading my way? I have joint pain and mobility issues, probably as a result of the deconditioning that occurred over 15 separate hospital admissions. The pain and fatigue are large barrier in my daily life.

How will I cope with university? And work? Can I hold down a job?

Sometimes I ask myself why I deserved this? And sometimes I ask who can I blame? It might be helpful to have someone to shout at.

These questions crowd my head often. Children often think like this of course. But usually not with the same force that people with chronic illnesses do. There aren’t many places that want to hear these questions and seek answers. I wish there was.

Finally, it’s quite a big and nerve-wrecking thing for me to be here today, speaking to you like this. But I’m here because after everything that’s happened to me I do think it’s so important that the experiences of patients, and children who are patients, is a big part of the discussion. So I’d like end by thanking Guts UK for bringing me here today, and also to thank yourselves for giving me this time to speak. And for letting me be involved in deciding the Top 10 Research Priorities for pancreatitis.”

Lola is not alone in her struggles. In fact, Lola represents the tens of thousands of people affected by pancreatitis each year in the UK. Guts UK will not stop medical research until we find an effective treatment, a cure for pancreatitis. Guts UK will continue raising awareness until pancreatitis is on the lips of the nation, and we’ve empowered more people to seek help, sooner. You can help families like Lola’s by donating today. Thank you.