To mark Achalasia Awareness month, Pamela shares her Achalasia journey, in hope that it can help others. Pamela talks about how difficult it was to understand her achalasia when she was diagnosed as a teenager, as she didn’t get support from doctors and couldn’t access appropriate information on the condition.
Pamela says: “this is totally out of my comfort zone…to write about me. Asked if I would contribute to Achalasia Awareness month, my thought process has always been to be in denial, as it was a stomach op I had years ago…I’m ok…!”.
“Back then, there was no internet or Google search. I was present for the consultant meetings, young, naïve, and the language used was way above my understanding., Sso I sat there very quietly whilst decisions were made as though I wasn’t even in the room”.
“A Rare disease means limited resources on research, limited access to experts, the overwhelming feeling of isolation, how do I decide what to do next? My life is busy, I am a full-time carer, I have a full-time demanding job, and no time to think about myself, using time pressures as an excuse not to face what’s next. For now, my quality of life is good, you see I travel where I want to go and eat everything new, like it might possibly be something I may never eat again.”
And she finishes by saying “Life is limitless, remember”.
Please comment on and re-share Pamela’s story to increase awareness of this rare condition and unite for a rare swallowing condition. You can find out more information about getting achalasia diagnosed and about different forms of Treatment Options on Achalasia Action’s Website, Achalasia Action. If you need support on living with Achalasia, contact us on info@achalasia-action.org or on 0300 772 7795. You can also join our Achalasia Facebook Page, and follow us on instagram and X (formally Twitter).
Pamela’s Achalasia Story
I only found out about the word Achalasia 8 months ago, although I have had the condition for over 30 years.
My story begins as a teenager. I went from being nicknamed “fat Pam” to suddenly getting a lot taller, but also noticeably slimmer.
I realised I could no longer swallow bread, or eat McDonald’s, and ended up only consuming chocolate, which I could suck, or the odd crisp. I remember my local surgery, with the intoxicating clinical antiseptic smell which always made me feel queasy. My GP, Dr Gill, who I can still remember being very authoritative and empowering, probed my abdomen.
I couldn’t keep any food down and even swallowing water was proving almost as difficult. During the consultation, I felt like I was choking, and struggled to breathe through the panic of it all, whilst flushing bright red at his questions.
Now that I have read through other people’s misdiagnosis stories, and the amount of time it has taken them to be told of this disease, I feel so fortunate that Dr Gill knew about the condition, or at least sent me in the right direction to be diagnosed within weeks of me reporting symptoms. It was July 1993, and by October of the same year, after several endoscopies, barium swallow tests and a pneumatic dilation, the decision to conduct a Heller’s Myotomy operation was taken.
Back then, there was no internet or Google search. I was present for the consultant meetings, but I was young and naïve, and the language used was way above my understanding. So I sat there very quietly, whilst decisions were made as though I wasn’t even in the room. I was left with quite an impressive abdominal scar as laparoscopy was not available back then. I have since located all my medical notes from that time, which show that after my operation it was concluded that although there had been some improvement and I was able to eat soft foods again, there was still restriction in my oesophagus. My medical notes say: “ sadly this young lady is still suffering and the latest barium swallow shows restriction”.
I focused on getting on with life. Back then, feelings and emotions weren’t something anyone talked about let alone asked about. I took the “grow up and get on with it” approach.
We now talk a lot about gut health. For years I have self-managed my diet, steering away from hunks of meat that would scare me, white bread, over processed foods, seeing these as simply no-go foods, full of chemicals that reacted badly with me. I know when I can eat, what I can eat, which wine and the fizzy drinks that make my throat feel constricted. This is conversely to the advice I was given recently that consumption of fizzy can open you up…this does not work for me!
Therefore, I basically live within the limitations of food restriction and times of awful achalasia episodes. With people around me wide-eyed and not understanding, assuming I am choking, giving me the Heimlich manoeuvre rather than giving me the space to breathe through yet another episode, caused for example by some harmless chicken.”
This isn’t a “feel sorry for me” note, this is my story, one I would hope resonates with others. I realise today, now I’m back under consultation, having had a huge scare last April, in the middle of Morocco, helpless, choking for almost 6 hours, scaring my daughter and those empathetic souls around me, that I need to talk about this condition. I need to understand and read about how others with this rare disease cope.
Today, my oesophagus is grossly enlarged, 3 times the size of my stomach. My oesophagus pushes against my other organs when it is filled, and even after 7 days without food, an endoscopy procedure still found food collected in the cave created by my enlarged oesophagus.
I am at the crossroads of decision-making; POEM (Peroral Endoscopic Myotomy) and Heller Myotomy are not options. I could try more dilations, but there are risks of ruptures. My only other option is an esophagectomy because Pamela now has end-stage Achalasia.
When I got the first opinion from a doctor, I let rip, angry, because no one told me to keep getting checked and manage my condition better…what’s the point, in hindsight? What I miss now is blissful ignorance. ’Rare disease’ means limited resources on research, limited access to experts, the overwhelming feeling of isolation, how do I decide what to do next? My life is busy, I am a full-time carer, I have a full time demanding job, and no time to think about myself, using time pressures as an excuse not to face what’s next. For now, my quality of life is good, you see I travel where I want to go and eat everything new, like it might possibly be something I may never eat again. Life is limitless, remember.
