Confessions of a Spoonie: Louise Munro
Hello everyone! Today’s Confessions are from Louise Munro who is a student in Edinburgh. She recently contacted me about her dissertation and in return agreed to take part in this series for me, so thank you again Louise!
Hello everyone, I’m a 22-year-old Medical Sciences student at the University of Edinburgh working on my dissertation (I’m exploring the experience young people with chronic illness have of moving from children’s into adult services) and crawling towards the graduation finishing line. I am becoming a crazy plant lady and love to sit and watch (read: talk to) my green babies. Currently addicted to the TV show Bones and singing along to the soundtrack of ‘The Color Purple’ Broadway musical. Take a listen to Cynthia Erivo’s ‘I’m here’, its incredible. My family live in Lancaster now but before that we lived in Cyprus for 5 years. When we moved back to the UK in 2009 I got a nasty virus and have been ill ever since, I am now a participant in the 100 000 Genomes Project after 8 years of trying to find a diagnosis.
What condition/s do you suffer from and when were you diagnosed?
The billion-dollar question! Currently my healthcare team’s theory is that I have a mutation that hasn’t been seen before, causing a condition that mimics a rare lipid storage disorder, with extra elements of fatigue, GI disturbances and a reactive liver. 8 years and counting…
What are the main symptoms you suffer from?
Abdominal & bone pain, nausea, fatigue, digestive troubles and bleeding disorders.
What 3 things have you learned about your condition since being diagnosed?
- Our bodies have so many ways of telling us when something isn’t right and we have to learn to listen… symptom tracking has become really important – besides who knows what little thing could be the key to finding my diagnosis!
- How you feel is not always reflected in your blood results, I’m still learning to not always rely on the numbers and believe in myself. I know how I feel.
- This isn’t specifically about my condition (more my journey to a diagnosis) but I’ve definitely learned that doctors do not like not having the answer but how they respond to not knowing differs a lot; some get frustrated and start doubting your story, some overdo the pity, others simply avoid you and put your case on someone else’s desk. Every now and again you come across someone who doesn’t mind admitting they don’t know what is going on but refuses to stop thinking and coming up with weird and wonderful theories to test or someone who is just willing to listen.
In what way has the NHS supported or not supported you?
Ok so I suppose there should be a disclaimer at the start of this answer… seeing as my dissertation came about because of my experiences with the NHS it is safe to assume it hasn’t been great but it is only fair to admit that I am complicated case and the age that I got sick did not help matters at all. There is a lot that I am very grateful to the NHS for but it has been a very mixed experience from a support point of view.
I only have a couple of examples of good support, in fact only a couple of people stand out in a positive way; people who saw me as a person not just a puzzle or a number. The first is the Consultant who got me into the genome project, he was the first Doctor I had dealt with who bothered to create a relationship with me, he took me and my experiences seriously and the time to understand the impact illness was having on my life outwith his clinic. The second was a student nurse from one of my last admissions in a children’s ward, who was the only one who tried to treat me as a teenager, for example instead of making me point to a sad face on a poster she would ask me how my pain was, in actual words, and she trusted my responses. This was huge at the time and something I have never forgotten. More recently is my current GP, I was nervous about starting with a new GP when I moved to University as my surgery back home had started to pull away from my ‘complex case’ but she is lovely and I’m now trying to plan next year around not leaving her! She actually listens and I feel believed and cared for.
While some Doctors have tried their best to help me, despite the challenges, many more have not and pushed me onto other people as soon as they possibly could, there have also been a few horrors such as the haematologist who wouldn’t listen to my concerns after a particularly troublesome bone marrow biopsy (not even when I was readmitted the next day and a bleed was found on the scan – which she continues to deny), the nurses who needed threats of formal complaints before they would give me my prescribed pain medication (because teenagers can’t possibly need strong painkillers), the adult ward nurses who don’t consider where to put their only young patient (in the room with the hallucinating 95 year old who screams all night of course).
There are many more examples to show a lack of support, such as the poor communication between different specialties and non-existent communication between Doctors in Scotland and England (even as a teenager I was the coordinator, passing messages back and forth), the overuse of every possible variation of ‘watch and wait’ (with no actions taken), no process to move from paediatric services to adults and an over-reliance on numbers, from blood tests to measurements on scans.
Until last year there was always someone else to be referred to who might have a light bulb moment but now it seems everyone is relying on the genome results, has more or less given up hope of finding a diagnosis and are now just waiting for my blood results to take the decision to operate out of their hands.
Also I don’t know about any of you but there has been no support to help process any of this, and whenever I’ve questioned it in the past I’ve been given the standard depression/anxiety questionnaire to fill out and sent on my way when I could show I wasn’t clinically depressed, but doesn’t it make more sense to show an interest in preventing it getting to that stage…
What is the hardest part about your illness, in your opinion?
Recently the hardest thing has been adjusting to the increased fatigue and brain fog that has joined the party since the rotten respiratory infections I had last winter. Overall though, the hardest thing has to be that whatever it is I have is mostly invisible. I’m sure I’m not the only one who has struggled to balance a wish to keep health issues private but the need for something to be visible to be believed.
List 3 phrases you hate hearing off other people about your condition.
- “I’ve got the cure… / you should try [insert: yoga/ underwater exercise class/ herbal remedy/ stopping all medication/ arnica/aloe vera cleanse/ cutting out sugar or gluten/ obscure juice concoctions/ sleeping less or more/ positive thinking etc.]”. As much as I appreciate the thought and that you clearly want to help, please get all the facts before you try to cure me through the health pages in the newspaper.
- “You must be feeling better…” This assumption is made any time a picture of me smiling is uploaded to social media, or I’ve dressed up and put some make up on for the day, or someone hears I’ve been able to do something fun or anytime something challenges the misconceptions of chronic illness, particularly invisible ones, people often have.
- “You’re my mystery patient/ puzzle / trouble case / problematic one…” Why do healthcare providers say these things as though it’s a compliment or a positive thing, do they think I want to be known as their most complicated case? That doctors around the world are scratching their heads in confusion… well no I do not. I appreciate you may not know what to say but, trust me, after 8 years this is not it.
List 3 things you wish people would say/do instead.
- “Do you want to talk about it? / Can you explain…” As my case has gotten more complicated and our chances of finding a diagnosis have decreased, family/friends feel less comfortable talking/asking about it. Just talk to me, I don’t bite and I won’t breakdown… I wish I could convince people that it really is ok; in fact I’d much rather talk about it than hear false stories and presumptions being passed around.
- “Let me tell you about…” Just to contradict that first point, it would also be great if people sometimes offered to do something low energy as a distraction, or just got in touch to tell me a story about something going on in their life, good or bad! So often people tell me they didn’t want to bother me with so much going on not realising how welcome distractions often are.
- “Can I help with anything…? / I’m on my way…” I still struggle asking for help so any offer to help out with even the littlest of things would be so welcome.
Do you have any cheats/tricks to get you through the day or to help you complete certain tasks?
I have a collection of microwavable cushions that I don’t think I could live without – the newest addition is a huggable cactus (I warned you – crazy plant lady in the making!). If you ever see me on the street I’ll probably have a weird lump somewhere under my coat, just go with it, it helps me get out the house. Little organisational things like having emergency taxi money, spare medication and a drink in my bag whenever I go out also definitely help me. Ooh also, I recommend having a few songs that almost never fail to make your smile or remind you of something great, even a few minutes of distraction can make such a difference!
Have you picked up any new hobbies or activities since being diagnosed that you didn’t think you would?
I was very active before I got ill so finding hobbies I wanted to do around the house was a big adjustment but now I have a beautiful collection of little plants to care for. I also taught myself how to make dream catchers which has been a great way to take my mind off things.
What do you do? Work, study?
I am a final year medical sciences student in Edinburgh.
What are you plans for the future?
My immediate plan is to (hopefully) reach graduation in one piece. Beyond that is still unclear but after a rest I want to figure out a way that I can make a difference in transition healthcare, to try and bridge the gap between children’s and adult health services for young people with long term illnesses. Honestly, trying to plan anything long term is something I still really struggle with but I’ll get there!
Is there anything you would do differently since being diagnosed, and why?
I will let you know if and when that ever happens. In hindsight though, because the first few theories that my Doctors had were pretty scary I went along quite meekly with their plans and probably didn’t stand up for myself enough. If I had to give a catch phrase for my experience, ‘watch and wait’ would definitely be in the top 5 and yet for the first few years we rarely asked ‘for how long?’ or questioned it at all. If I had to do it all over again I’d advocate for myself a lot quicker and make sure we got answers to our questions
Has your illness taught you anything about life?
The importance of perspective, patience and self-compassion – for such a long time when I was first ill I would beat myself up for not being able to do something or having to cancel plans or change my university plans etc. etc. etc. but then it clicked that I wouldn’t expect those things of someone else in my position so why would I treat myself differently.
What advice/information do you wish you were told when you were first diagnosed?
I wish someone in my healthcare team had admitted that everything wasn’t as simple as they were making it out to be, and that they had been open that it was unlikely to be a short-term thing. While they jumped from idea to idea and I went from specialist to specialist no one suggested to me that we could be dealing with a chronic condition. As much as I can see their perspective of not wanting to worry a teenager about a chronic condition they couldn’t name or do anything about, I still wish I had known where their heads were at so I could start preparing/changing my mindset.
What would be your main piece of advice for people who have just been diagnosed with your condition?
Be strong, believe in and advocate for yourself. You alone know how you feel so be honest with your Doctors, don’t play down or ignore symptoms just because they don’t fit in with the latest theory. It is probably going to be tough finding Doctors who are open to helping a mystery patient or who see you as a person instead of just a puzzle but persevere there are some lovely Doctors out there who want to help as much as they can in the circumstances. Also, learn from my mistakes: don’t worry about asking for help it doesn’t mean you’re weak and don’t take the good days for granted but remember that a good day can be a really great day to choose to rest.
I will be posting the next Confessions next Sunday (18th June)!