Image by Gerd Altmann from Pixabay
just as tired as pillow time,
you wake, one big ache.
Look up the Definition of the Word Chronic
There are some common misconceptions held by the majority of healthy adults, who have never gone through a chronic illness of any type:
You Can Just Shake it Off.
You Just Need Some Fresh Air.
You're Just Being Melodramatic.
You’re just lazy – a Healthy Diet combined with exercise will get rid of your problems.
All of these are complete hogwash when it comes, to gastrointestinal chronic conditions, ME, fibromyalgia, Chronic obstructive pulmonary diseases (COPD) or chronic fatigue.
In my opinion, people are reacting this way as a psychological mechanism that we humans seem to use to build up our egos, bolstering the belief that our own problems are more important than anyone else. When push comes to shove, most of humanity would calmly whistle and stare at the sky rather than admit they're allowing their ego to rule their behaviour.
I don't think this way.
I know that starving people in many parts of the world face problems much worse than mine.
I know that countries, where a lack of a basic sewage/sanitation structure leads to bacteria-laden wells that kids drink from daily becoming sick with life-threatening diseases definitely have it worse than me.
I know that many people live so far below the poverty line that it means they're not vaccinated with the generic childhood vaccines we have where I live, ending up with diseases like Diphtheria, measles and a much greater case of respiratory diseases. Not to mention a host of diseases caused by malnutrition.
I Know and recognise that all of these people have it worse than me.
But this is no excuse for the bloody-minded ignorance that people show for the pain and suffering caused by 'the living death' that is a chronic illness.
The clue is in the definition of the word, Chronic (sourced from Merriam-Webster's dictionary).
A: a condition that is continuing or occurring again and again for a long time.
e.g. chronic indigestion or chronic fatigue syndrome.
B: always present or encountered.
Source: www.merriam-webster.com/dictionary
That means it never goes away, depending upon the severity of the symptoms it can be a living hell. Sometimes it gets less symptomatic, and you can organise things that the average person takes for granted like visiting a friend in Manchester, whereas other times the symptoms are so severe you struggle to do the basics like eating (preparing the meal is literally painful, or often in my case I have nausea for weeks at a time and only eat once/day), showering or washing the dishes.
I was inspired to write this blog, as yet again, a friend I've known since I was born has dismissed my current flare-up like it's just a bad case of the snuffles, which riled me up to the point of breaking.
The strange thing is I called it... I said to my girlfriend earlier that day on Signal msg app, Chris (name changed for anonymity) who has been hounding me to visit him in Manchester did exactly what I said he'd do.
In response to my email below, which I made as clear and concise as I could, setting out how ill my current flare-up is making me (see below in italics):
Email:
"I've just been hit with a chronic fatigue episode that has lasted 8 days so far. The last couple of years they have only been lasting 3 days. I'm just wiped out m8.
My current symptoms are:
feeling extremely tired all the time – you may find it very hard to do daily activities
still feeling tired after resting or sleeping
taking a long time to recover after physical activity
problems with thinking, memory and concentration
muscle or joint pain
feeling dizzy or sick
So, I've got 6 out of 11 of the regularly reported CFS symptoms.
This is why you've not heard from me m8, also why I'm not looking to organise anything right now. I can't even get on my bike to ride the allotment at the moment. If i didn't have the car I'd be screwed, or rather the tomatoes would be screwed.
Anyway, I didn't want you to think I'm ignoring you on purpose buddy.
Which I felt was a friendly, but clear and concise, email explaining why I couldn’t get on a train to go visit him in Manchester.
He then sent me this text about a week later:
"Hi. How about yous visit us sometime over the next week or two for the MIF fest? Got the email? As difficult as planning is... I'd like to see you."
At least 5 days after I'd sent him the email above in response to another one where he was trying to cajole me to visit Manchester.
I lost my rag, as it boggles my mind how often I see this attitude from my friends and responded via text (see below in italics):
Text Message:
Chris. I'm fckn fed up to the back teeth of you treating my chronic illnesses like they're a joke or something 'I can just shake off'.
Do you know, I called this exact scenario when I was speaking to my girlfriend on Signal earlier, I said, "my friend has been cajoling me to visit him in Manchester, but he has this habit of acting like I can just shake it off when I tell him how debilitating the symptoms are during the flare-ups from my chronic illness."
This is not the first time you've done this.
Have a fckn think about it Chris.
Ask yourself this question... when you contacted me saying you'd been experiencing bad anxiety/depression (and even a few panic attacks) and needed to talk to a friend who'd been through the same, did I ignore what you were telling me and suggest a day trip to the beach (a bit of fresh air) was all you needed?
No, I was thoughtful and gave you the best advice I could think of based on my past problems with anxiety/panic attacks, and I listened to what you needed to get off your chest.
I'm fuming about this to be honest because if you read that email, you must either think I'm a melodramatic liar, not care, or you're on a wind-up mission.
I can't even ride my bike right now due to dizziness, let alone walk to the train station to travel the 45-minute journey to Manchester.
It would be a good idea for you to give me some space for a bit if you value our friendship.
Cheers
I'm not trying to call out my friend in any way, which is why I changed his name and I know he doesn't read my blog. That is not what this is about.
But the information I included of the correspondence between us both shows exactly what happens day after day to the chronically ill. There is nothing I'd like more than to be able to get out in the fresh air, go visit a friend I haven't seen in a while, or do a fckn bungee jump. The thread of conversation above exemplifies perfectly how dismissive even the kindest people can be about chronic health conditions.
Here is the issue in a nutshell, and the reason I'm writing this blog.
I have overheard so many people say exactly the same things about someone they know with a chronic condition, that I'm 99.9% sure that these misconceptions are bolstered by a set of influences both personally and on a societal level.
On a personal level, most people are overworked and therefore go through periods of lethargy or fatigue, for example after the school run to pick up their children. Then they shake it off and get on with making dinner or helping the kids with homework, or one of a handful of daily tasks that need doing. Therefore, they assume you can also just shake it off
"It's just laziness and if they got out more they'd learn coping mechanisms for their chronic illness."
That is a direct quote from one armchair physician I overheard in the pub one night and my friend who was with me, who has had depression/anxiety disorder for over half his life prompted me to simply move tables, I think more for his own sake than mine as he's much more prone to exploding on morons who are talking about things they have never experienced before.
Back to the point about these misconceptions though, on a physical level that lethargy/fatigue I mentioned earlier re the person in the pub's opinion... that fatigue is 24/7 hours, seven days/week for as long as the flare-up happens with chronic fatigue, and then the symptoms become milder, although they never completely go away, they're just kind of like a thrum in the background now. For most people this is a much deeper level of fatigue than they have ever experienced, the only things I can think of that are comparable are Jetlag after a Long-Haul flight, or sleep deprivation if they have a period of insomnia which lasts more than 3-4 days.
If you added muscle aches, headaches, and for me, extreme nausea that doesn't make me vomit but does make me feel like I'm about to constantly, then we're getting closer to what it is to live with my particular chronic illness.
I think people assume - because they can't imagine living with that level of lethargy/fatigue for more than a few days (as with jetlag) - that it is somehow impossible that anyone else could live with that for months at a time. Coming back to what often is the death of logic, the ego; "how can all of these symptoms be real as s/he wouldn't be able to get out of bed."
The fact is that sometimes you can't, in my case I have ended up in bed for the best part of three days with only brief stumbles to the kitchen (to fill a massive bottle of water) or to the toilet to take a leak.
On a societal level, it becomes more complex. The medical community know the truth that severe chronic fatigue (like I experienced a week ago) is linked to some underlying systemic condition or disease, and it can be brought on by a wide range of disrupting factors that can occur.
In a vast majority of cases, even specialists haven't got a clue what causes the majority of chronic fatigue. And they're unwilling to listen to you as the patient when you tell them that you know exactly what it is linked to because you can feel what is happening to your body in phases.
In my case, I have spent 8 years with ever-increasing symptoms that all began with a (wrong) diagnosis of the over-arching term Irritable Bowel Syndrome (IBS). This article from the ncbi, which is a medical resource that doctors use (usually GPs if their unsure of the condition) to try and find out where the problem lies.
Within professional communities (i.e., medical, public health, academic, and policy), there is a large degree of variation in the use of the term chronic disease. For example, the Centers for Disease Control (CDC) classify the following as chronic diseases: heart disease, stroke, cancer, type 2 diabetes, obesity, and arthritis (5). The Centers for Medicare and Medicaid Services have a more extensive list of 19 chronic conditions that includes Alzheimer’s disease, depression, and HIV, to name a few. This difference, within the Department of Health and Human Services alone, although not surprising to those in the field, has the potential to create confusion and misunderstanding when speaking in generalities about the impact of chronic disease, the cost of chronic disease, and overall measures to reduce chronic disease.Quote from the ncbi report I linked above
When the medical community doesn’t understand these conditions they see them as not a priority, after all, they’re not life-threatening. This attitude filters down into society as a whole (and I'm generalising here because not everyone thinks like this) to see people with chronic illnesses, at best as a nuisance, and at worst as hypochondriacs who make themselves sicker because 'it is all in their head'. That is another direct quote I’ve overheard coming from some armchair physician talking about her own daughter (behind her back) in a restaurant.
Eight years of chronic illness will change the way you think, and you either learn to be mentally stronger, or you end up having to be looked after. In my case, it seems that I'm mentally stronger than I ever thought I could be because I've managed to learn my own coping techniques and rely very little on other people’s help.
I know where the problem lies for me as it all started in my gut, and the first and one of the most debilitating symptoms to start when I have a flare-up is nausea.
It is possible that a gastroenterologist with a decent holistic approach could help me, as there are a number of other organ systems (such as the liver and gall bladder that in combination produce bile, which as well as helping to break down fat, is used to wash the small intestine clean of bacteria, the majority of which are housed in the large intestine, these other organ systems are an essential part of the digestive process) but unfortunately, I am assigned to 'The Royal Liverpool Hospital' who have cancelled every one of my appointments to follow up on these ever-worsening symptoms for 3.5 years now. They have also never listened to me in regards to checking other organ systems, other than the liver which they found to have some scarring.
To wrap up this blog and why I wrote it in the first place, is in the hopes that some people might read it and change their misconceptions about people with chronic illnesses.
It is a constant battle to just keep up with what fully healthy people see as essential tasks, like cleaning. It is a constant battle to do things that you once enjoyed like swimming, hiking up even a small hill or going on trips to visit a friend.
It is a constant battle against a body that is malfunctioning, and the last thing that you need when this is what your life entails, is ignorant people judging you.
Thanks for reading 🙂🌿
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