There are many out there who believe that those who get to ‘work from home’ and are unwell and have chronic conditions somehow have it easier. In this podcast, I try my best to break that myth by sharing some important life lessons that I’ve learnt from experiencing this. Listen here…
…but if you can’t have a listen, then the text of it is below too:
“I Wish I Was Ill Like You” – Truth About Chronic Illness
“”I wish I was ill like you” said a friend
Yes it’s true… that’s what someone I knew said to me a few years ago when she didn’t want to go to work.
Not just her, many people like her have had their ways of expressing their envy of my position.
But what position was I in that was so enviable?
Hi I’m Shruti and this is my podcast, Footprints No Boundaries where I speak about health, self-help and life lessons.
A request… please hang around and hear me out today – whether you ever listen to another podcast of mine again, I’m okay with that but do listen to this one. It’s important to raise awareness on this issue that I’m about to speak about.
So I deal with multiple medical issues and over time I’ve come to understand that somehow in people’s twisted thinking, it seems like the easier way to live.
Don’t get me wrong, I don’t believe someone else has it easier but to wish ill health upon yourself because you don’t want to go to work tells me two things.
It tells me that the person really dislikes where they are in life and that they have no clue what it’s like to be unwell every. single. day.
That’s what chronic conditions are – they’re chronic – they DO NOT go away.
So I thought to share some things with you that may hopefully break the myth surrounding such strange ignorant thinking that somehow being unwell is the easier option.
I have on last count 12 medical conditions… what rules my life most is Endometriosis and hypermobile Ehlers-Danlos syndrome.
So let me quickly explain about them…
Endometriosis is when the lining found inside the uterus is growing outside it. It creates lesions that get stuck onto multiple organs causing an extreme amount of pain in those areas, radiating to other areas, there’s bloating, hormonal imbalance, painful periods and so much more.
Then there is hypermobile Ehlers-Danlos syndrome which is a connective tissue disorder. Now connective tissue supports the skin, bones, blood vessels and our organs – with ehlers-danlos syndrome, which is a connective tissue disorder like I said, you have to battle pain, stiffness healing complications and again, a whole host of other issues.
I was struck by Ehlers-Danlos 4.5 years ago – so one day, I just suddenly, within seconds couldn’t stand – I was screaming and crying. The doctors couldn’t figure out what was wrong, I was put on steroids and misdiagnosed quite a few times.
The steroids took a toll on me and finally 18 months on, I was diagnosed with hypermobile Ehlers-Danlos syndrome.
I had to use a wheelchair for a year and have been using walking sticks for 4.5 years now – I use walking sticks to help provide me with stability and give me extra support for when I have dizzy spells and fall to the floor.
Some of the other conditions I have are adenomyosis, fibromyalgia, mast cell activation syndrome, PoTS and few more things… ummm for those curious, PoTS is what causes the dizziness and falls.
So everyday, I begin with the challenge to stand – to take those first few steps can be extremely painful… then I start thinking of taking a shower, getting ready, making breakfast and sitting for work – it all requires multiple conversations with myself, willing myself on, ticking off each activity like it’s an achievement – and in all honesty, it is – it IS an achievement.
For anyone suffering with a physical or mental condition will understand how the basics can be such a task. Many of us can’t think of being employed for the lack of consistency we may deliver which then limits the consistency of our finances, reducing our opportunities of financial growth and security.
This then means we need prioritise between food, medication, paying for doctors visits and even the form of transport we use.
I visit many forums online and chat with a number of people on social media who struggle with all of this.
We also struggle with the added frustration of knowing what we’re capable of but being stuck in a body that has its limitations.
Doctors can add to this frustration too – especially when you meet ones who give you the run around, don’t know what they’re talking about or don’t believe you.
All this doesn’t just strain us, it strains our family and friends – it hurts them too. You then live with the pain and the helplessness you see in their eyes.
I’m not saying ANY of this for sympathy – I’m saying this for empathy – it’s important for anyone believing that those who are sick and are at home have it easier.
Also, I have to add something very important here – I am privileged enough to have a lot support from my family – I don’t need to be concerned about eating well or doctor’s bills, but bad health teaches you one important life lesson – that none of us in life can afford to be complacent – neither can I.
Which is why, despite my pains and struggles and multiple off days when I’m unable to move, which brings me down to tears, I make an effort – some days I manage some days I don’t.
I can’t plan too much, my body gives up. I have to rest more than usual – a day before if I’m to go out a day after, and then spend another two days after keeping my feet up and resting – otherwise I’m inviting more pain and trust me it never ever fails to visit.
So no, to anyone who believes that being unwell is easy because people like me get to stay home – you are so wrong.
I would like you to understand that there is nothing more precious than a healthy body – if you have it, respect it. If you don’t value your body and have abused it then rethink this – it’s not fun being sick.
Some of us have genetic disorders – we didn’t get a choice, but if you have the option then why not take care of what you’ve been blessed with?
Okay, I’ve just realised, I only spoke of basics like food, work, finances – I never spoke of food restrictions, or the lack of a social life or being able to maintain relationships – that’s a whole new challenge which I will try tackling soon probably in another podcast.
To all of you still listening – thank you.
If you’re someone who is battling a chronic condition or are a carer of someone that is and wish to share what you think of today’s podcast then please do I would love to hear from you.
If you’re someone who isn’t battling a chronic condition and would love to share something then I’m all ears as well…
So how do you reach me? You can message me on Instagram @footprintsnoboundaries or through email [email protected]
That’s it, so until next time everyone! Have a good one – b-byeeee!! :)”
Some Relevant Reading:Explaining:
- Yoga for Period Pain & Endometriosis – Does it Work?
- My Experience: Connecting Endometriosis and Ehlers-Danlos Syndrome
- My Thoughts & Tips: Chronic Illness and Relationships
As always I would love to hear from you about today’s podcast and even if you have topic suggestions – please do share in the comments section below.
Previous: Podcast Episode 6 – What Do I Do With My Life? What’s My Purpose?
Up Next: Podcast Episode 8 – Forcing Yourself to be Positive? (coming next Sunday)
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Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.
It has always amazed me that people say such things, and have an idea of illness as some kind of romantic occasion where you lie around all day simply watching Netflix. It’s as though they cannot think of the reason why we don’t work full-time etc, let alone all the other work we do around organising medical care etc etc.
It’s really ignorant and inconsiderate to say something like that, but also from a place of total unawareness of what chronic pain is like. I had a classmate said to me in school that she wished she had my illnesses so she could skip PE. Big LOL on that one. But hey. Secondary school kids. All forgiven for that one but it still sticks with me til this day.
It’s awful to hear these types of comments and yet I hear them in some form or another time and time again! People just don’t understand that chronic means chronic. It’s never going away.
Thank you for such an informative post. I do have one question for you. Does EDS typically show up later in life? Does something set it off? I ask because you mentioned it struck suddenly and without warning. I know it overlaps with a number of other health issues, but wondered if you might have more to offer on that.
Shruti,
Thank you for voiling this! Chronic conditions aren’t vacations! They are journeys (often exhausting) to be able to do what everyone does: live. My FND symptoms make most activities harder, because as soon as I put in a certain amount of energy, my movement symptoms kick in. Not only does that make whatever I am trying to do harder, it also often triggers reactions from others…anything from fear to pity (with the occasional person able and willing to just accept it). I often am very emotionally sensitive to their responses and to the general energy around me, so I have had cascading interactions at times, where their response worsens my symptoms and then they respond poorly to that. When I have good days, I look fine, but that means that it looks like I’m ‘fine’, and people easily misinterpret my getting symptomatic when asked to do something as an attempt to get out of it. Even my family had that response at times. When it all started, I would get symptomatic when my mom would ask me to do chores, as an example. She would assume I was having symptoms to avoid the chores, when the reality was that the request put this bit of extra pressure on me, which would trigger my symptoms. I am managing things much better now, but there’s always something on the edge of my interest, ability, or energy that can trigger a similar response.