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:
- 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?
- 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.
- 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.
- 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.
“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.
- 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.
∞ ∞ ∞
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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😈 Decided a long time ago The pain 😨 would be with the rest of my life and I have tried to learn to live with it.😉
If we can’t control our bodies, becoming a philosopher is a wise step.
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Everything said here is so true! I feel guilty all the time for work
For having to stay in bed, for not doing the house work for whining about my pain all the time. If I don’t say it no one knows 😦 but I can’t help but feel
You are 100% correct! Ty for writing this!
This is where I am confused. I never used to say anything, and I would just silently deal with it by myself. But no one knew how torturous every day was, so I decided to just start telling people how I was feeling that day. But now I feel like people think I’m just a whiny person, or that I’m exaggerating. Where is the balance? How do I express my pain without coming across as a complainer?
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Thank you! I loved this article. I know I push myself when I’m really struggling, and it’s because of guilt and perceived expectations, and I end up doing chores (for example) but worsening my pain, and becoming grumpy that I’m not being helped. It’s hard to ask for help, and hard to admit sometimes things are too much. Thank god there are so many ladies out there willing to share and reassure each other. Where would we be without each other?
I’m glad I could help in a very small way. It’s hard to know when to push yourself and when to stop. For me anyway.
I was diagnosed with endo two years ago & had painful cyst on my ovaries since the 10th grade. I started feeling guilty this year because of my condition. I hate having to tell people I’m in pain and when they don’t try to understand I get very angry towards them. I feel like I’m pushing many close ones away, I feel guilty for this. I also find myself resenting some young moms because I’m stuck on wondering if I can have kids but is always being told I should wait until after I graduate college. That’s 4 years from now and I’m stuck thinking what if when I try then I will be too late…
Reblogged this on Unravelling The Knots and commented:
Great read. Guilt is something I battle every day and it really gets me down. because I haven’t had my lap yet, a lot of people close to me still think I’m being a drama queen or lazy or spiteful, which couldn’t be further from the truth! and so I sit with the guilt of being such a terrible person because people do things for me and I often cannot reciprocate. For instance, my boyfriend has been utterly amazing lately and I wanted to show my appreciation by cooking a lovely surprise meal with candles and dress up all pretty again (I rarely do that anymore)…but of course I didn’t have the energy. So he took me to get takeout and I passed out in bed by 9:30pm. Yesterday he was very obviously keen for some sexy playtime but I was sore and tired and really not even remotely turned on..not by any fault of his! It was just me. Again.
I didn’t mean to write so much but obviously it’s bugging me more than I realised. I’m unsure how to deal with the guilt really. It eats away at me every day.
Oh darling, that sounds difficult. Remember to be kind to yourself. Adjust your ‘best’ to how you’re feeling. It’ll be different every day. Nobody’d expect a person with a broken leg to run. Don’t run. X
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Good analogy ♥ thank you for the comment
I’m really struggling now. Diagnosed about 13 years ago, had operation after operation. Discovered I also have PCOS and the had 2 enormous tumours on my ovaries which resulted in losing one. Been trying for children for 7 years and rejected for NHS IVF.
I am exhausted, in pain, demotivated, depressed and now suicidal. The only reason I’m still here is because I have the most supportive, understanding, loving and caring partner anyone could ever ask for. I feel guilty about the impact my depression and pain is having on him.
I hate this disease!
Your story is a sad one. I feel for you. But don’t feel guilty, feel grateful instead. Not everyone has a supportive partner. Are you trying IVF privately?
Thankyou for this, I am waiting for tests to be diagnosed. But I’ve read the symptoms and I have them all. I’m very worried as I’m trying for a baby and trying to further my career. Feel guilty all the time for sitting around while my wonderful husband does everything. I was wondering if (personal question, sorry) about bowel systems. I am constantly having to take really strong laxatives.
My bowels reacted differently. Have you spoken to your consultant or GP about it. It seems like you have so much on. Remember to take care of yourself. My thoughts are with you.
When my pain is it it’s worse I am extremely constipated. Uncomfortably constipated and have had to take prescription medications to help.
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I want to cry. Took a month of work to study for my finals and now,then I signed up with another agency and they call me the next day to come to work I don’t know what to say … sorry,I can’t because my uterus is killing me?- worst part is when you think that the pain is over and you finally stand up to go shopping and then..2 min later you start feeling nauseous again and pains come back and you wish you starved at home rather than came here.
I was a flaky fiend a million times. God, how many days did I plan to wake up early,be super productive, meet my friends and go to sleep?NO!instead you spend all day or two in on a sofa praying for it to stop. Praying that this time the fatigue won’t be so severe. I don’t get a pay for missed work days… seriously feels like a dead end. Don’t let getting started with exams. When a last day before an exam you’re in pain and the next day you have to write a paper under exam conditions being so tired and lightheaded after this crap but hey,it doesn’t matter! Because you were fine on a day of the exam! This disease is hell, I feel so lazy. + got chronic conjuctivitis lately to add to my illnesses’ collection.
I do often go to work then I feel awful before or after men’s. During all those awful fatigue phases. My colleagues looking at me creeping up the stairs like a turtle,thinking that I’m so lazy. I hate it