Five reasons why endometriosis sufferers feel guilty (but shouldn’t)

There is no reason why ill people should feel guilty. There is no reason why endometriosis sufferers should feel guilty but they do. Do you? I know I do.

The incurable disease’s had precious little press and even I, the sufferer, don’t feel like I have a grip on what’s been happening to me. This pervasive confusion surrounding the condition’s had a serious impact on my coping mechanism and my resilience.

It’s not that, endometriosis, as a condition, is trifle: I’ve been in pain for nearly a year now, its intensity regularly exceeding six on a scale of one to 10; my sleep’s frequently disrupted as I’m tossing in bed, succumbing to the cruel inevitability of the warm, dull pain spreading across my pelvis and legs all the way down to my toes, occasionally across my shoulders and arms, interspersed with sharp twisted knife-stubbing like pain and don’t even mention going to the loo; my interaction with the outside world is restricted, leaving me feel isolated and depressed.

It’s not that I’m being reckless with my health: Before my illness escalated, I tried very hard to look after myself. I still do. I continue to eat the right foods. I minimise my caffeine intake. I don’t overdo it. I try to look after my mind and body. I listen to the doctors’ advice. I seek to understand the condition. I seek to find the strength to cope with it.

It’s not that my expectations are unrealistic: I’ve made peace with my condition and accepted that it’s going to have a long-term impact on my life. If I had to advise a friend in this situation, I’d tell her to be kind to herself, to take it easy, and to prioritise her needs.

So why is it easier said than done? Why is it that when I try to apply this in practice to myself, it doesn’t work? Why do I feel guilty? Is it because I’m ill and I can’t get on with my life? Is it because my condition affects how I interact with the world and how the world interacts with me? Is it because I’m still trying to conform to the standards that apply to healthy people?

There five key reasons why this is happening. Only by understanding the reasons why endometriosis victims feel guilty, can we start facing up to our nemesis and embark on a route to a more positive state of mind. So here goes:

1. NEGLECTING FAMILIES AND FRIENDS: Let’s talk husbands. Raise your hand if your condition forced you and your husband / boyfriend / partner to sleep in separate bedrooms at least once? Is it up? I thought so. Mine was. My husband’s had to endure numerous nights of abandonment, as I traipse to the spare bedroom to make myself more comfortable and avoid waking him up with my tossing and turning. He’s also had to battle with me through the financial worries. We’ve missed out on quality and leisure time, as I’m not confident to make any plans, nor am I physically and mentally up to going away or socialising. He’s had to become my carer, despite have a full-time demanding job. I feel guilty because I’m at home so the least I can do is to cook us dinner, right?

I can’t be there for my friends. This is the harsh gist of it. Visiting is hard, because planning is challenging. So is travelling. I simply can’t predict how I’ll be feeling at any given time on any given day. My friends understand, and those who couldn’t make allowances, were never real friends in the first place. This experience has sorted out my friends from my acquaintances quite nicely. Besides, I’ve turned into that unreliable friend who regularly cancels on you at the last minute myself, so it’d be a bit rich of me if I were to start complaining. When I do manage to meet my friends, there’s the risk that my illness will eclipse his or her needs. It’s a precarious balance. It takes a lot of mental stamina to push aside the feelings of pain and endo-fatigue to focus on somebody else.

This goes out to all endo-mums out there: I don’t have children, but the response to my last blog overwhelmingly showed that those of you who’ve been lucky enough to get pregnant and bear children are now struggling to bring them up. How can you prioritise your needs if you feel, as you naturally would, that your children need your attention more? How can you look after somebody else if you can’t look after yourself? And how can you match up to all other mums if you simply can’t keep up with them? How does it make you feel? Exasperated? Like a failure? Exhausted? Downhearted? Guilty?

2. IMPACT ON WORKLIFE: My employer, with whom I have a permanent contract of employment, is contractually obliged to support me through a period of illness financially and by adjusting my working environment. So why do I feel guilty about not being able to work? When feeling sufficiently well, I’m a good worker. And yet, when occupational health got involved, a part of me felt guilty as if I’d done something naughty. Or as if I was making it up. It’s just that I wasn’t.

Too hasty return to work, left me open to attacks on my attitude, because I found it hard to focus and be productive in the way I’d been in the past. I was trying, but because I looked fine, nobody could see the toll that the severe pain, endo-fatigue and despair depression had on me and my ability to work.

3. THINGS YOU DIDN’T DO: Regrets about not having tried for a family earlier are hard to overcome.

“I shouldn’t have left it so late.”

“I should have tried for children earlier on in my life.”

“What if I’ve missed out on my chance of being a mum?”

When we don’t doubt our health, we take things for granted. The ‘what if’ game is tough for women with endometriosis. The guilt that comes from the realisation that you’ve potentially played Russian roulette with your life and your fertility is hard to bear. The fact that you’re only human is of little consolation. The challenge is to learn to accept it.

4. COMPARING YOURSELF TO THOSE WHO ARE BETTER OFF: I feel guilty because I shouldn’t resent the people who have children, when my own fertility is under question; the people who run, when I can’t; the people who socialise, when I’m isolated at home; but I do. Resentment is a powerful feeling and I thought I was a better person. But yet again, endometriosis forces me to face up to my human weaknesses. However hard I find it.

Resentment is a powerful negative emotion and is closely associated with the feeling of injustice.

“Why me?”

“How dare you tell me not to worry? You don’t know what I’m going through.”

“Easy for you to talk, you’re not the one who’s got to live with chronic pain.”

Such comments, more often than not made through ignorance or frustration rather than ill-wishing, cause hurt and can even lead to open hostility to ‘outsiders’, the uninitiated, who are not ill, and who don’t understand the condition.

If these things are said by your sisters, brothers, husbands or friends, the resulting sorrow and anger can create real chasms between you and your loved ones. This is the very last thing you need, at the time when you’re already feeling down and vulnerable. The awareness of what the condition is and how it affects us is critical, as is learning to communicate better about how we’re feeling. If you can summon up enough energy to do so that is.

5. COMPARING YOURSELF TO THOSE WHO ARE WORSE OFF: I’ve touched upon the hard and difficult issue of comparing one disease to another in one of my previous blogs, titled “Don’t worry, it’s not cancer”. In it, I argued that it’s unfair to compare every disease in the world with cancer.

“Since when has cancer become the threshold for ‘illness’ and since when does it have exclusivity for empathy?” I asked.

I felt guilty for having written those words, because endometriosis is not potentially terminal in the way that cancer is. I know that, although, I recognise that women with endometriosis ‘rub shoulders’, so to speak, with the dreaded disease. An online source claims: Women with endometriosis have an increased risk for development of certain types of cancer of the ovary, known as epithelial ovarian cancer (EOC), according to some research studies.

Rather, the dismissive comments of others and their attempts to downplay my suffering made me feel defensive forcing me to retort with these comments.

This misunderstood side to Endometriosis and the daily battles that, we, its sufferers have to fight, are the primary reason why more awareness of the disease is so urgently and desperately needed.

Now, let’s get it straight. You’re a great mum. You’re a good person and a conscientious friend. You’re a good wife. It just happens that you have an incurable, long-term disease, called endometriosis, and this must and does affect your life. You can’t do as much as you used to or would like to, but this is because you’re ill, and not because you’re being neglectful.

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Endometriosis sufferers shouldn’t feel guilty. In my next blog, I will discuss ten steps to achieving a more positive frame of mind that will help you overcome this negative emotion.

Please share your experiences. Be vocal. Leave a comment. Raise awareness through an open discussion. The chances are there’s somebody out there who’s also facing the complex and unfamiliar feelings discussed in this article. The chances are they’re as confused and worried as you are. Together, we’re stronger.

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