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. 

Making excuses for ourselves

It’s really easy to get into the habit of blaming ourselves for the things our illnesses put out of our control. Commonly we feel guilt about not being able to do the things that we’d like more consistently, be that working with our illness or attending social events. Sometimes though I use illness as the solution to my guilt as if I’m squaring why I am unable to do something in my own head before even looking at another way that might enable me to do that action. 

It seems like some days my illness is the excuse for everything I can’t or don’t want to do. The guilt of constantly postponing things because I feel sick gets me caught in a vicious circle where I don’t want to do anything, or don’t feel like I can do anything.

Sometimes it’s better to find something we can do consistently rather than accomplish nothing at all. Accomplishment and productivity are great tools for keeping guilt at bay.

Feeling like a burden to others

I’ve talked about this subject before, but illness has a way of making you feel like you’re creating problems for everyone else by being unable to be more independent. This is a really hard mindset to change, but your wellbeing and the wellbeing of those around you will improve as you start to allow others to help you without worrying that it’s something you should feel guilty about.

If you’re feeling troubled about taking people up on offers of help too often, then communicate these concerns rather than bottling them up inside of you. This way you can share your worries about burdening people and more often than not find out that they are happy to continue helping you, so you both feel assured! 

As I mentioned in my post about independence, the people worth truly having around you are usually the same people who will give you help pretty much unconditionally – precisely because they want to help you back onto the path of better health.

Believing you’re less of a person

Illness has a way of eating away at our self esteem, often because of a series of little setbacks that deter us from trying something again. I say this time and time again to people I know who are chronically ill, but illness makes us much stronger than the average person

Even if you feel that you’re not coping well with illness, just by getting by each day you’re employing a huge amount of willpower and strength and eventually in time you do come to realise this, rather than feel you’re getting weaker. 

Disappointing your partners and friends

I’ve become a lot happier since I moved away from rating my success with living with chronic illness against the goals and aspirations of people of those around me. Most of the people I spend my time with are of similar age, but don’t have any of the health problems I face and many of them find it hard to understand why I can’t leap impulsively in the way that they do.

You’re never going to disappoint anyone if you explain the reasons why you can’t do a particular activity, and why more often than not if you’re asked to do that difficult activity week after week the answer will have to keep being no. It’s not being stubborn of difficult, just being practical sometimes.

For example my work colleagues frequently ask if I’d like to go bowling. While I could technically probably play one game, the combination of heavy lifting, bending and rolling is not a good idea for me to attempt. That one game would end up with me in pain for quite a few days. Now not everyone’s going to appreciate those facts so it’s our job to explain why certain activities are off limits, but others are not. 

It’s really easy to take risks or be impulsive when you’re well, so don’t accept any pressure or shame for your reasonable aversion for avoiding activities that will cause you pain – as long as you explain the reasons.

Not feeling like you’re normal

It’s hard to lose sight of normality many years into chronic illness, but many of us aspire to living a more normal and healthy life and getting on the path to feeling better becomes our main life goal. This is one of the positives of chronic illness I suppose, we have a simple and undeniable goal in life when others would list inane or trivial things in their list of dreams. We just want to go back (or as I prefer) go forward.

So some people (inadvertently) do their best to remind you of your frailties and weaknesses, I’d urge you to focus on the undeniable strength you have left.

As I mentioned in my post asking someone who is chronically ill lots of questions:

Worse still you start to become known as that person who is chronically ill rather than another human being, as if you’re less important or flawed somehow. That simply isn’t true. People who are chronically ill or disabled have to  work so much harder in life than people who aren’t, and we are deserving of your time and admiration, not your sympathy.

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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.

9 responses to “Guilt is an understandable side effect of chronic illness

  1. T. South

    I completely relate to this; even though I am post menopausal now and Endometriosis is no longer ruling my life, it definitely changed who I am forever. Back when it was a daily struggle, I felt the guilt and powerlessness about not being a complete Mother to my step son or a wife to my husband. They both made excuses for me constantly, explaining why I could not attend a family wedding or our son’s game; the list is endless. And though it was not any fault of mine, still I experienced it as guilt and shame. Even other women, who you would think would understand, would further make me feel guilty by saying things like “oh I have cramps too, everyone does……get over it” and I knew they obviously were not talking about the kind of pain that endo brings.
    Above all, it was that feeling of not being “normal” , of being ill or weak or broken , that just made me want to curl up in a ball and go away.

    • I think we can all relate to your feelings, but believe it or not you’ve given those of us still suffering with endometriosis a great deal of hope – because you got through it and you are no longer struggling with pain. That’s going to be a huge source of inspiration for some of the women who read this blog, and it gives me great hope for the future too. Thank you.

      I can particularly understand what you’re saying about some women not understanding endometriosis and it’s effects. Very heartbreaking when that happens.

      • T. South

        I had not thought of that. I have been reaching out on the internet and in life for so many years for myself for support and then, to offer support , and sadly it runs in my family so I have nieces going through it …but yes, there is light at the end of the tunnel. It was a long hard decision for me to not get a hysterectomy but I did do surgical things to kind of push my menopause ahead, sooner. And I am happy about that ! And free !

  2. Thank you so much for this post, I feel exactly like this and I am constantly guilty about what I’m not doing. The main thing I feel constantly guilty about is money, because I am not working at the moment and not earning my own money I find it so hard to spend my husbands money even if its for things I need e.g. medications. I blame myself for ALL the bad stuff or if a friend decides to no longer be a friend…

    • Tracey Booth-South

      me , too ! guilt for not being able to be present at my son’s games , guilt for not being able to make love to husband, earn more money, tons of guilt for tons of reasons beyond my control. I even felt like I must have deserved this pain. Thank goodness for menopause which has saved me and I see the world differently now !
      you are never alone.

  3. Pingback: Guilt is an understandable side effect of chronic illness | My Pain of Endometriosis

  4. Pingback: Guilt- The Monster in the Room | Change Your World

  5. Nic

    I feel relief at reading this… I googled “feeling guilty because you’re sick and a whole heap of “don’t feel guilty for ringing in sick” sites came up but as a person suffering with hypogammagloblanaemia (CVID) which is life threatening if each new infection can’t be jumped on quick enough I’m not worried about the days that I am so sick I ring in sick because I’m sick every single day of my life ….. So thankyou for helping me sort through some of my feelings 😀

    • Ni Nic, I know it’s immensely frustrating to have to keep calling in sick. I’ve been there myself, you feel like everyones talking about you behind your back and you’re not carrying your weight. But truthfully most people I know who are chronically ill work extremely hard and want to work as much as they can and are mortified when they just can’t do it. It’s a common problem, but it does get easier to ask for more help over time.

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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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