This story is part of the Guts UK Pancreatitis Awareness Campaign.
Kirsty Donaldson’s Story
Thanks to social media, there is a very supportive community of pancreatitis patients, their partners, friends and family in the UK. You don’t need to spend much time in any of the UK based support groups to see that this is a very kind, empathetic and supportive group of people. However, every single person wishes they hadn’t been brought together by pancreatitis. You don’t need to have read many of the patient stories to gain an understanding of how painful pancreatitis is, both physically and emotionally. Many of these patients have not only suffered pain but have had to fight a real battle to get a diagnosis, then to be seen by a pancreatitis specialist, a battle to keep working (one that many patients lose) and quite possibly another battle with the department of work and pensions to get the benefits that they both need and deserve.
I am no exception. I first became ill when I was 24. I then suffered for six long and difficult years before I was finally diagnosed with pancreatitis. My pancreatitis was probably initially caused by having a gallbladder and common bile duct full of micro-stones. I was diagnosed with Irritable Bowel Syndrome and psychosomatic pain after a few tests; after two visits to A&E (both times I was discharged without any tests or scans) it was made clear to me that I was wasting their time and they didn’t want to see me again. I then suffered what we now know to be dozens of attacks of acute pancreatitis at home. In retrospect, I really don’t know how I coped with it because a lot of the time I was so ill. If it had been treated when I first became ill, I would be much better, possibly even completely well. Instead, like many patients I have a daily fight with pain and nausea. I had to retire from my beloved job as a music teacher, give up playing my fiddle in concerts and give up all of my favourite outdoor hobbies (wild swimming, skiing, climbing mountains). I am mostly housebound and find it difficult to go anywhere without help. Most painfully of all, I am too unwell to be pregnant or bring up a child. All these things are difficult but at the moment I am utterly devastated that I won’t get to be a parent.
These losses make my life sound pretty grim, and it is very difficult, but I have many positives in my life too and I am absolutely determined to enjoy my life, and mostly I do! I am surrounded by wonderful, kind, supportive and inspiring people who put themselves out all the time to help me. I like that they ask me how I am really getting on and not be satisfied with a polite ‘I am fine thank you’. They message and phone me far more than I manage to return the messages, knowing that I really appreciate this and will return when I can. They come and visit me more than I visit them because I find travelling difficult and they don’t mind when I sleep late or need a nap. They go out of their way to find food and drink that I can tolerate and don’t mind when I don’t eat something they have brought me. They pick up on when I am struggling and do nice things like sending me a postcard. I really hope that they all know how much I appreciate them and that everything they do makes me feel loved and helps to keep me going. We have six nieces and nephews who both my husband and I adore and we try to spend as much time as we can with them. Nothing can replace having children of our own, but our relationships with them all is really special and important. I have had to give up a lot of things I loved doing, but I have replaced them with new hobbies that better suit someone that is housebound and spends much of their time lying down!
There is one thing that I have done that has made a particularly massive difference to my life and that is the research, campaigning and fundraising that I do for pancreatitis. I fell into it accidentally because I was really horrified to discover that my experience of delayed diagnosis is not uncommon. I conducted an online survey of UK based pancreatitis patients. I wrote it up and submitted it to NICE as part of the process for writing new pancreatitis guidelines. I found out recently that my report was used to write the new guidelines. Obviously I am delighted and really proud of this, it also shows that individual patients can genuinely make a difference! The UK is very fortunate to have teams of dedicated, compassionate and very knowledgeable pancreas specialists. My survey showed that the majority of patients treated by these teams are very happy with their care. The problems (and there are many) generally occur before the patients reach a pancreas specialist. I have now spent a lot of time speaking to pancreas specialists. Very importantly, pancreas specialists have identified the same problems as patient groups; we are all on the same side, fighting for the same things.
So what do we do now? The highest priority has to be raising money for research into treatments for pancreatitis. Every pancreatitis patient will tell you that not only is it an incredibly painful condition but there are not many treatments available. Even the way to manage the pain is greatly disputed. I have spoken to and/or been treated by four different specialists and none of them agree on which procedures should be used. I think it is quite hard for other people to understand that I never feel well, my pain levels are always very high. I hate being told I look well, because I never feel well. My husband laughs at me because I go to great lengths to make myself look as well as possible and hide my illness, but then I get annoyed when people tell me I look well because I never feel well. I think that depression should also be acknowledged as a symptom of chronic pancreatitis. It is impossible to be ill like that and it not impact negatively on mood and mental health. I think that chronic pancreatitis patients should be offered talking therapies. I had cognitive behavioural therapy as part of my treatment at the pain clinic and it really helped make me much less anxious about my condition. I sleep much better now even though my pain is worse.
I asked in several pancreatitis support groups what they would like health professionals to remember when they treating patients. One issue was mentioned far more than any other: the stigma associated with common pancreatitis. Medics and nurses frequently jump to the conclusion that patients are alcoholics. Once an A&E doctor asked me five times in five minutes how much alcohol I drank. He refused to listen to the fact I am teetotal and alcohol was not the cause.
My story is a call to arms. Pancreatitis is a horrible condition with many challenges in its diagnosis and treatment and a desperate need for research. If we are quiet about it, we will go unnoticed and nothing will change. More people will be left undiagnosed and in pain without any help or support. I can’t let that happen. We need to raise money to fund research. Guts UK is a fabulous charity and one of their key priorities is pancreatitis. Money raised by Guts UK from the Pancreatitis Awareness Campaign will support pancreatitis research. Guts UK will also continue to campaign to raise awareness of pancreatitis in the UK. We need your help! Please join the Guts UK Pancreatitis Awareness Campaign Facebook group and keep an eye on the website to see how you can continue to help. Please continue to share, post and tweet anything and everything you see about pancreatitis. We can’t do this without you!
I want to finish by thanking everyone at Guts UK for running the campaign. They are a very small team, and have put in a huge amount of work to get it up and running. Most importantly I want to thank everyone that has bravely told their story. A lot of these patients don’t talk about it to their friends or family; they have suffered in silence. This makes their contribution really valuable and is helping to make the patient voice heard! #Patientpower #GutsUK #pancreatitis #chronicpancreatitis
Read more about Kirsty’s journey with pancreatitis.
What can you do?
Join in our Kranky Panky Weekend fun and fundraise for more pancreatitis research with Guts UK. Check out some of our fun ideas here!
Guts UK is proud to fund the only fellowship into pancreatitis in the UK. However, one fellowship every three years is not nearly enough for this potentially deadly condition with no specific treatment. We need to do more. Help Guts UK fund more research to find a treatment for pancreatitis by donating today.