A chronic illness is very hard work

Sometimes I want to scream from the rooftops:

My chronic illness is extremely hard work. I’m doing the best I can and most of the healthy people around me have no clue what I am going through.

It sounds very melodramatic I know, but sometimes a good complain in my head is enough to buoy me through things.

So I feel very ambivalent sometimes when someone says I make ill health look so effortless. On the one hand it’s disappointing to hear that sometimes that I make it seem so easy. On the other I’m secretly glad that I am able to cope – somehow – despite the fatigue making it feel like my immortal soul is trying to slip out of my eyelids I am so tired.

I wouldn’t wish ill health upon anyone, but sometimes despite all my positive thoughts and goals to help me cope I wish I could reach out, touch the nearest person around me that I’m not getting through to with my impassioned pleas to understand chronic illness, and let them borrow my pain for a while.

Then rationality makes me realise if I had this opportunity how difficult it would be to take that burden back from them, and how this is my burden to bear.

Every single day is a trying effort with endometriosis, I try to push it aside as far as I can until it chases and pins me again. I’m managing, but boy is it hard work.

Sometimes it’s hard to keep going

When you’re ill all the time it’s really hard not to lose sight of yourself. To lose confidence in your abilities. To not feel like a disappointing pile of missed opportunities rather than a human being who has more than the average person has to cope with.

Every day is a battle with a lack of energy and pain, not to mention the expectations of those around you. Worst still are your own expectations as you struggle not to gauge your current wellbeing against who you used to be before you got sick.

As such being chronically ill is can be one of the hardest jobs you’ll ever have. It equates to working life quite well actually.

Illness takes a great deal of time and energy out of your day and has to be tolerated as a part of life. Having an incurable, invisible chronic illness is a big responsibility. Illness means you have to manage your life as it becomes more like work and less effortless.

An illness like endometriosis can mean that every day presents a new challenge. I might be sick to my stomach when I wake up, my abdomen might twinge and ripple with pain, I might not be able to get up at all due to crippling, weighty fatigue.

No two days are the same with a chronic illness, many are variations on a theme. A little pain here, nausea that subsides, tiredness that doesn’t lift after the longest naps. A growing and shrinking list of variables that are slung randomly onto your body. Waking up simply means tweaking the recipe, maybe losing the sickness, but growing the pain. Or pain that disappears only to be replaced with the sinking sadness of exhaustion. Waking each morning just resets yesterdays problems spawning something more.

So in my head my endometriosis feels like my second job, another stack of baggage to sit next to the single weighty suitcase that others carry around.

An example of why I cope

The last thing I want to seem like with my posts on how to cope with endometriosis is that living with chronic illness is easy. Certainly not, every single day is a concerted effort on my part. Planning my week carefully based on the energy I have, looking forward enough to see where the potential problems in my week are likely to be and navigating around them.

Some days I am on the cusp of throwing up, and somehow I muddle on and lull my brain and body through the inane details of the day, back to calm.

The pain leaves me sometimes, but only when I prepare myself carefully. Reducing how much I carry, going on slow, careful walks. Cycling when I feel able. Never overdoing things. The pain is never completely gone, instead it sulks quietly somewhere on my body waiting for the moment when I least expect it to surprise me.

If I seem to be managing well, it’s from quiet, careful deliberation week by week. Navigating my illness feels like I’m trying to map an uncharted sea when my boat needs repairs and each new wave changes the landscape.

Life is tiring, but life is still good, and it’s still possible to cope somehow despite all the hardship. And it’s that profoundly simple rhythm to the illness that keeps all of us going.

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

6 responses to “A chronic illness is very hard work

  1. Pingback: Brain Tumour Thursday Radio – It Is Not YOur Fault |

  2. I find everything you say here in the 3 blog posts I’ve read to be sooo true to me and how I feel! Since doctors don’t seem to recognize so many of the symptoms it’s hard to get everyone else in the world to believe I am really feeling this way and not just lazy or a bad employee! I feel exhausted so much of the time. My baseline for energy is extremely low compared to what it used to be. And like you mentioned in another post, as soon as I get a cold, I feel like I’ve been completely swamped and no one understands it. I don’t even know what to do.

    Lately when I get up in the morning and get ready for work, I wonder, is today the day I’m going to crash my car and die because I am so exhausted and don’t feel like I can drive to work and every second behind the wheel for my 45 min drive feels like torture to stay awake. But that seems like almost every day when I get into a rut and it’s so scary!

    Even exercise which used to buoy me up and give me energy now just makes me want to take a nap. People seriously don’t get it. I don’t even know what to do. It’s scary to be so exhausted. Everyone else around me seems to have so much energy and enthusiasm for life! I just feel drained and every accomplishment is so difficult. How can we get the medical community to recognize more symptoms? Is there even any research going on about Endo? I never see a “walk for the cure” for endo! I never see fundraisers etc. It’s pretty sad because prior to fearing I had Endo about 3 years ago, I have NEVER heard of it! Not in health class, not on the news, not in real life, nowhere. It’s scary how little is known about it and how many people suffer. I really feel like my life is so different now than it used to be.

    Once in a while I’ll have a rare day when I’m at my normal energy levels and it’s AMAZING. IT boggles my mind how much I can accomplish and how good I feel. And that doesn’t happen all that often. Just one late night, just a few drinks on the weekend or a night of bad sleep and I’m right back to square one. It’s so frustrating I could scream. I’m so glad you are blogging about it! I’m so glad for so many who are because otherwise I would feel completely alone with these symptoms. It’s pretty funny how docs don’t recognize these symptoms, but it’s all over the internet about how girls with Endo feel this way!! So I know it’s true and not just me. But it’s hard to explain that to your job/family/friends… ugggg.

    • Yeah you’ve just expressed one of the most frustrating elements of having endometriosis – it’s so common but get’s no where near the same amount of support or help as other illness. This has to change.

      It’s really easy to let the pain overwhelm you, but focus on the good aspects in your life and what you still enjoy about it, this will keep you going on the hard days. I’m writing more updates all the time, so stay tuned and thanks for the support.

      • I’ll definitely stay tuned! Thanks for your response! I know…we definitely need to get more support from the medical community. I find docs don’t seem to know much about it or how it effects different people differently. It’s really frustrating. Thanks!

  3. Lois

    Thank you so much for this blog. I have visited the Hospital many times here in Africa only to be told the don’t see anything wrong with me and that makes it hard for others to understand am really sick. This my first time of visiting this blog i stubled over it in search for help and thank God am not alone.

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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