The pain of living with undiagnosed illness

A series of red Japanese tori gates.

For the last four years I have lived with a third, undiagnosed long term illness.

I have been getting sicker, and this had posed a new set of challenges and complications which could have possibly been triggered by treatment of my first chronic condition.

Living with endometriosis is one thing, but living with an unknown condition is equal parts terrifying, upsetting, frustrating and lonely. You can’t read up on condition websites, you can’t join support groups and there’s no treatment options until you have a name.

I want to raise awareness of the long-term limbo of being undiagnosed, as unfortunately having endometriosis seems to raise our likelihood of developing another long term condition.

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How others can talk about how we live with illness

It’s amazing watching the change in someone when I explain that I am chronically ill. There’s a subtle change that happens. Small enough for someone else to miss, but I’ve seen it often enough now that it seems so obvious to me now.

It’s part of the negative side of having an invisible illness. It’s something that people who are well will suggest that I should count my blessings for, because I can somehow hide my illness around me like underclothes, and present it only when I want.

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Feeling down: how chronic illness can effect your self esteem

I must admit that despite all my positivity and tenacity there are moments when illness gets the better of me and I feel miserable.

For all my coping mechanisms and hopeful strategies, frankly there are some days where I just want to curl up in bed and not bother with the world. However, it’s only natural to feel like this from time to time (particularly when you have an illness to wrangle with). Sometimes the sense of frustration we feel can be too much.

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Doctors don’t always know best

At my last doctors appointment I stopped my doctor just short of them stating that my illness wasn’t that serious. It’s not something I particularly wanted to hear them say out loud. We don’t always see eye to eye on my treatment, and I suspect that they sometimes feel I overreact when it comes to my illness. However, I had no desire to hear my suspicion confirmed.

This moment reminded of the fact that if I hadn’t seen another doctor on the fateful day when endometriosis was first mentioned to me, I’d probably be none the wiser even now as to what was wrong. Their quiet insistence that there was nothing there, and there was nothing wrong with me, melted away the moment I repeated my symptoms to another doctor.

They recognised the hallmarks of endometriosis immediately and my diagnosis and eventual treatment started not long after. While I not recommending that you ignore your health professionals advice, I’d urge you to be mindful of the fact that only you know the pain that you are in, and how it effects your quality of life. To that end, you don’t have to be complicit in the marginalisation of your illness, because you don’t always have to take your doctors word as gospel.

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Illness can be extremely isolating

Over the past couple of years I’ve become a glass half full sort of person when it comes to illness. Being more optimistic about living with chronic pain hasn’t been easy, it’s been fraught with sadness and hard fought. Over time I managed by becoming better at realising my limitations rather than stubbornly trying to continue on as the person I used to be before I became ill.

However I’d be lying when if I said there aren’t days where I find things profoundly difficult. Most of my self doubt these days comes from how isolated illness can make you feel.

I want to talk through how I feel very cut off from the rest of the world when illness gets me thinking a certain way, maybe you’ll relate to some of it.

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Do you consider yourself disabled?

This was a question I was asked on a web form recently.

It was a required field, and the only answers were “yes” or “no” so I couldn’t skip it. It brought up a wider question in my mind about how I and others percieve my illness and if I or other people would class it as a disability.

It’s such a massive grey area. Perhaps that’s why it’s continually left for us to personally decide rather than a blanket decision being given in endometriosis’ case.

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Guilt is an understandable side effect of chronic illness

I have no issue with telling you that even now there isn’t a week that goes by where I don’t experience some sort of guilt because of living with endometriosis.

It’s a silent side effect of living with a chronic illness. Being poorly all the time makes you dwell and worry about things in a way that someone else wouldn’t. This is because feelings like guilt do their best to isolate you further and further until you feel like you can’t cope. 

It’s really hard to master those feelings, but I wanted to talk about the most common forms of guilt I experience, and how I do my best to let those feelings pass. 

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People treat you differently when you’re ill

When you become ill with a chronic illness like endometriosis, no one mentions how people will perceive you differently.

Many people don’t mean to of course, but to some people you’ll always be that person who is always poorly rather than just you.

It’s one of the hardest ideas to grapple with many years into illness. The concept that you want to be treated normally, but have different needs to other people and occasionally need some support from others, and that means telling people that you need help.

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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.

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Spare a thought for the chronically ill this Christmas

I really enjoy Christmas, but I learnt a very important lesson this week when preparing for this years celebration.

Christmas (and any other major holiday) is a really tricky time for anyone who struggles with a chronic illness such as endometriosis.

The reason being that despite the original meaning of the celebration, Christmas is usually a time of celebration and excess. Unfortunately for those who are in chronic pain, it becomes harder to get into the idea of celebrating and excess precisely because of how much extra energy is expended this time of year.

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.

My other sites

Pioneer Project - Video games, UX and sustainability