Life with chronic illnesses: fighting for diagnoses, recognition, and proper care.
Hi all!
I did an introduction video on my Dtube channel so I figured I would just jump right in to my blogging here.
So first things first, I typically refer to my chronic (medical) illness and mental illnesses both as chronic illnesses, simply because it makes things easier than saying both, but also because they are obviously all chronic (long-term) illnesses. However, in this post I am explicitly just referring to my chronic medical condition for the time being.
I am currently diagnosed with Irritable Bowel Syndrome (IBS, as most people know it) and received this diagnosis nearly 3 years ago. At the time that my symptoms came on and due to the intensity they suddenly appeared with, I was fortunate enough to get a rather quick specialist (Gastroenterologist) appointment which led to a quick diagnosis. From the onset of my symptoms, to my appointment and diagnosis it was only a wait of about 5 months. The story about my symptom onset and initial treatment is pretty long so that's worth a whole other post if anyone would be interested in me sharing it though.
Anyway, since moving to the UK 11 months ago I have been receiving treatment from the same GP. However, it wasn't until about 6 months ago (after we found out that another treatment drug wasn't helping my symptoms but was in fact making them worse) that my GP decided to refer me to a dietician and a Gastroenterologist for further consultation, as he believes I may have been misdiagnosed to begin with. This came as no shock to me, as I had been having doubts since my initial diagnosis back in the US. My first clue to this was that the Gastroenterologist who diagnosed me only ran ONE test before concluding it was IBS, and that was a simple blood test to rule out celiac disease. When this blood test came back normal (meaning I did not have celiac disease) she quickly concluded it must be IBS and briefly introduced me to the Low FODMAP diet and instructed me to follow this religiously to avoid symptoms. Bear in mind, this appointment only lasted around 15 minutes, I had been waiting 5 months for any sort of answers, and I knew I wouldn't be able to get another appointment with her for at least another few months. I was relieved to have answers, yet I still had this nagging feeling that they weren't quite complete. Nonetheless, I went through with eliminating the High FODMAP food (the foods that typically trigger IBS patients’ symptoms) from my diet as the specialist had instructed me to do.
It wasn't until a year and a half after my diagnosis and starting this diet that I was finally referred to see a dietician, as none of the other drug treatments my Gastroenterologist had tried seemed to be working either. At this point I found out that a referral to a dietician is usually one of the first steps after an IBS diagnosis, because they help in guiding the patient through what is called the elimination and reintroduction processes of the Low FODMAP diet. It was at this point that I also found out I had been adhering to the diet only partially and I was supposed to only eliminate all high FODMAP foods for a period of time, before gradually reintroducing them one food group at a time to determine what specific foods were a trigger for my IBS symptoms. I was beyond frustrated and disappointed to find this out. I remember feeling like I had suffered so much the last year and a half for no reason and that I had wasted all that time trying things that were never going to work without following the diet properly. Also, I am in the third year of my bachelor’s degree at this point into my diagnosis, so it's not like my medical issues were the only stresses I had to be concerned about. When I finally got an appointment with this dietician she deduced that I was following the diet elimination process as I should and that I should go on to the reintroduction phase ON MY OWN (i.e. with no guidance or monitoring which is not something you are supposed to do at all).
To put this into context, the medically recommended length of time to eliminate high FODMAP foods before moving on to the reintroduction phase is only 12 weeks, whereas I had eliminated them for roughly 78 weeks. At this point reintroducing these foods that I had not eaten for SO long would automatically cause a reaction and my symptoms to flare up, regardless of whether or not they actually triggered my IBS, because that's just what happens when your body isn't used to something for an extended period of time and then all of the sudden you reintroduce it to your body, it's going to freak out.
Needless to say, I did not put myself through the reintroduction phase by myself at this point because I knew it would be unsafe to do on my own. I did, however, seek out a second opinion of my condition and treatment steps from another Gastroenterologist due to other various problems I was having regarding lack of proper care and treatment from my initial one. This new Gastroenterologist did help me for the time being by starting me on a new medication that was found in a study to have helped many IBS patients gain symptom relief, which further helped them better manage their condition. This medicine (Lyrica) began to work for me and I was so grateful to just have some relief that I put the other issue of doing the diet properly to the back of my mind for the time being. I think it’s important to note that at this point I had been suffering from the most intense symptoms I had ever had throughout the past 2 years of my diagnosis and I had just entered the last year of my bachelor’s degree so I just wanted some effective, immediate relief. My symptoms at this point would often leave me unable to attend lectures or do my assignments, let alone even get out of bed, for days at a time and I was experience these severe of flare ups about once every 2-3 weeks.
However, after being on Lyrica for 6 months I moved to the UK to begin my master’s program. Upon establishing a GP here and filling him in on my whole medical history he made it clear that he was uncomfortable writing me a repeating prescription for Lyrica at the high dosage I was currently taking. I agreed to try decreasing my dose to half of what I was taking at the time and see how things went. But things did not go well and I ended up stopping the (smaller dose of) Lyrica after a couple of months.
Fast forward several months and one failed trial of another drug later and my GP finally referred me to a dietician and then later a Gastroenterologist. But keep in mind that at my initial appointment with him I directly pointed out the lack of testing I had that led to my diagnosis in the first place, and the lack of testing I had throughout the whole duration of my diagnosis up until then, and explicitly talked about my concern with this, at which point he agreed but still failed to do any further testing himself for the next 6 months.
In the UK it takes an average of 3-6 months before your able to get an appointment with a specialist in the NHS. I waited about 5 months before being contacted for an appointment with the dietician. When I finally got to my appointment with the dietician she hadn’t even been informed that I was already following the Low FODMAP diet (another failure on my GP’s part) so she wasn’t able to come adequately prepared to our appointment. Her initial reaction upon scanning my file was anger and feeling upset on my behalf that I had so clearly being receiving improper care and treatment for the last (nearly) 3 years since my diagnosis. I didn’t even have to express this to her, she could just tell straight away from reading my file and history that this was the case! She was such a lovely woman and we had a really nice chat, during which she determined that I had been following the Low FODMAP diet to a T, BUT that due to improper information from doctors and lack of guidance I had been incorrectly implementing it fully for all these years. The next step forward would be to reintroduce all of the foods I’ve been avoiding and wait for a period of time for my symptoms and body’s reaction to balance out before eliminating them again, but only for 12 weeks this time, and then moving on to the reintroduction phase. However, it’s not that simple because, at the time of this appointment, I was due to move from the city I’m currently living in just about 6 weeks. Thus meaning, I essentially have to wait until I am settled somewhere that I know I’ll be for an extended period of time and where I have established a GP and gotten a referral to a dietician before I can begin to do all this. Due to the nature of the reaction I’m bound to have, as I have not eaten any of these foods in almost 3 years, it would not be safe or wise for me to start this long process during the duration of my move while I’ll be in between doctors. To complicate things even further, I do not currently know where or when I will settle somewhere for an extended period of time, as I do not have a permanent job secured yet.
Although thinking about all the bullshit and lack of proper care that has gotten me to this point makes me beyond frustrated, exhausted, and upset, it was nice to finally receive some affirmation for the truth I have been facing for the last several years. Especially because this dietician was the first doctor to ever recognize this and share in my frustration and pain.
But what’s the point of me writing all this? I guess this is my way of shedding some light on just part of the many struggles individuals’ with chronic illnesses and/or disabilities go through in order to even try and receive adequate care and treatment. Although it was immediately obvious to this dietician that I had been receiving improper care all along, it was never obvious to the 8 various doctors I had been in the care of throughout the past (nearly) 3 years, or they just didn’t care enough to do anything about it. Unfortunately, my story is a common one in the chronic illness/disability community. I even see myself as one of the fortunate ones because I have not been fighting with these issues for 5+ years that many others typically do and because, so far, it hasn’t caused my body any extreme, obvious, and immediate harm or damage before the wrongs have been attempted to be made right (or have begun to). Also because I haven’t died due to improper care and treatment or lack of correct (or any) diagnosis as so many people with chronic illnesses and/or disabilities do.
P.S. I’m still waiting to be contacted for an appointment with a Gastroenterologist, but seeing as I will be moving in less than a month I really doubt I’ll get one before I move and have to start the process all over again with doctors and specialists.