Why I'm Not Currently Seeking Medical Help for My Chronic Illnesses

Saturday, September 14, 2019
NOTE: I just want to say before I begin this post that when I write about chronic illness and my experiences, it's because I hope that other people may gain some benefit and/or feel less alone by reading about my experiences. Or that people who want to understand their chronically ill loved ones a little better can learn something or come to understand their loved ones a little more. This post was written with the spirit of imparting knowledge and sharing experiences, so please keep that in mind. I am not looking for advice of any kind by writing this. Thanks! :D

This post has been lurking around in my head for some time. I've thought about making a video talking about my illnesses/the thing that I experience day-to-day, and I may still do that, but this felt kind of like a natural follow-up to that so I just... stalled on it for a long time. But one of the things I experience with my illnesses is a sore throat pretty often - to the point that if I talk a lot (particularly when I've also consumed a little processed sugar - look, my body is bizarre, okay?), I will actually lose my voice. Herbal tea sometimes brings it back, but, not often. So I figured this may be better shared in text form, rather than spoken.\

Before I get too much into it, I just want to mention that I may be talking about operations, medical procedures, and experiences of illness - both mental and physical. So, trigger warnings for all of that - if any of it makes you feel uncomfortable, please look after yourself. Do not read if you feel like you can't, and please look after your mental health if something you read triggers you - talk to someone you trust, go have a break from the screen, do whatever you need to do. Much love.

I've described a few of my symptoms and things I've been diagnosed with before, but a basic list includes the following: Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), Irritable Bowel Syndrome (IBS), Fibromyalgia, Migraines, Ovarian Cysts, Interstitial Cystitis, possible Postural Orthostatic Tachycardia Syndrome (POTS), and I also have Scoliosis. (Are you surprised that I had to pause multiple times to remember other things? Filling out forms, as you can imagine, can be a really intensive process.) To be honest, as I write the beginning of this post, I am just trying to recover from a really bad stomach ache (the words 'stomach ache' actually feel frustratingly inadequate for what I experience. Those who know me may know that I use the words 'stomach thing' (I started calling them that when they began when I was 11 years old) and, lately, I occasionally call them 'stomach migraines', but we still haven't come across a good term that fits what I go through), so this post may require some serious editing, as my brain fog is making me quite distracted.

Right, onto why I am not talking to doctors about my illnesses. I think almost everyone who has been diagnosed with a chronic illness has multiple tales of many, many tests, doctors, and general experiences of the medical world. And... I am no different. I first got sick when I was 11 years old - it started with my stomach - and I remember seeing a gastro-enterologist back then, along with multiple visits to my GP at the time. With my Mum (bless her, neither of us had any idea what was going on, but we were trying to understand). Ultimately it was concluded back then that I 'just had a slow bowel' and that 'it was just stress' (this confused us - I was 11/12 at the time... and not overly stressed in general. Although since then I have realised it's possible I was stressed, but whatever.). Because of all that, it was basically decided that I just had to deal with it. So, no treatment, really, at that point in time. 

My illnesses just got worse when I got into high school, but, again, we just had no idea what was going on. I was generally having a stomach thing every morning before school, and pretty often I would manage to pull myself together to go to school anyway. But my school Nurse was calling my Mum pretty often to come pick me up - not just because of my stomach, but because of migraines, some nausea, or just generally feeling so exhausted that I couldn't think straight. Other symptoms and stuff started later in life, particularly when I started at University, and my exhaustion and stomach stuff kind of got worse. A lot of my diagnoses didn't actually happen until my 20s, so I was basically just... living? before that.

During the last ten years, I've had multiple blood tests, seen many specialists, and had 4 exploratory surgeries/procedures. (It's possible I've had more than that, but I can only currently remember 4). I've also had countless ultrasounds, a few scans of my spine, and one MRI of my brain. I used to regularly see a few different GPs at a particular medical group near where I lived when I was a kid, and I still prefer going to see them when I need to.

But here's the thing - I haven't really seen any doctors or specialists, barring my chiropractor once a month, for about two years. I think I've been to my GPs about four times in that period, and also gone to get my flu shots, but otherwise I don't talk to my GPs about my illnesses.

Yes, we finally got to the whole purpose of this blog post: Why, though?

My answer comes in a few parts.

  1. I am just kind of sick of tests, doctors, hospitals, and procedures. I'm not sure if I've developed a bit of a phobia of a few of those things (it's possible, as I do get kind of anxious when talking about medical procedures and the smell of hospitals tends to make my heart race unnaturally), but I just feel like I've had enough tests to last me a lifetime.
  2. My GPs don't really have anything else they can do for me when it comes to my chronic illnesses. When I get a virus or an infection, or I need some sort of medical advice for a symptom that has gotten out of control, I head in to see one of them and they seem happy to help out when it's straightforward like that. But the fact is, they don't really know what's wrong with me. Many of my diagnoses are umbrella diagnoses - meaning that what I have isn't other things, so they've just slapped a label on it that kind of fits and encompasses multiple things, and just kind of hoped that that's enough. It's nice to have labels sometimes, but it also can be incredibly frustrating when someone doesn't believe you're sick because they don't 'believe' in the diagnosis you've received.
  3. Money. It a thing.
  4. And this is the big one: I am just trying to look after myself. The thing is that, over the years, I have realised that stress does make me much more ill. I manage my stress as best I can, but getting tests and seeing new doctors is just a baseline level of stress, and then add on possibly difficult treatments and stuff that result, and things just start to get out of hand. Travelling to and from medical centres is difficult. Finding new specialists to talk to is difficult. The list just tends to grow. And I have taken a fairly high level of responsibility for my health - it is kind of my career at this point - and I track my symptoms. I'm looking more at maintenance at this point, rather than active treatment.
  5. Just randomly, I'm not sure I have many other specialist-types that I can try. I've seen quite a few. (But definitely not all.)

I still sometimes worry that someone is going to call me out for talking about being chronically ill/disabled but not getting any sort of active treatment (I think this is leftover pain and such from being on Centrelink - they really just don't believe that you're disabled easily). I have to remind myself that I am doing the best I can, and that not seeing doctors and just looking after myself right now is the best choice for me. But it's hard.

Anyway, I'm not sure this is a unique experience amongst the chronically ill. Even though I don't really know many others who have ceased all treatment to the same extent I have, I feel like they're out there. And I am also in a privileged position of not having to visit the hospital often, and being able to mostly manage my symptoms myself, and have people who are willing to support me. I have to acknowledge that I am allowed to avoid seeking medical help because of my privileged position - I am extremely lucky. But this helped me to get my feelings out, and I'm grateful for that. I hope others gained a little something from this.

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