I recently did a 3-part series on some of the common side-effects of endo, including UTIs, thrush and constipation.  Now I want to do some on the emotional side-effects, beginning with guilt, and talk about reframing the way we think about things to combat these negative emotions.  Please bear in mind I am not a psychologist or mental-health expert – these are just some strategies that I have employed to deal with my own feelings.

I’ve touched before on how incredibly easy it is to feel guilty with endometriosis.  There are as many things to feel guilty for, it seems, as there are people in our lives.  I know that I personally feel guilty for:-

1. The disproportionate burden of household chores that falls on my husband;
2. Forcing my colleagues to cover my appointments and deadlines when I am unexpectedly sick;
3. Not being a reliable financial contributor to the family;
4. Depriving my husband of the chance to have a normal life with ordinary fun couple activities;
5. Letting down my clients by not being there for them;
6. Relying so heavily on my mum when I am supposed to be an independent adult;
7. Taking up doctors’ time;
8. Not being as sick as other people;
9. Being sick in the first place; and
10. Not being a good dog mum because I can’t walk her…

…to name a few.  I don’t even have mother-guilt to contend with, and sometimes I still feel like a guilt pudding with pain frosting.

So how can I deal with this?  How can you?

Step One: Identify the Culprit

I think step one for me is to identify the specific guilt I’m struggling with.  They all stem from slightly different causes (although the common theme is the idea that I can’t do enough) and all take a different type of internal dialogue to resolve.

You also need to figure out, is the guilt coming from internal pressures and a failure to live up to the standards I set myself, or is someone making me feel guilty (and yes, people can absolutely make you feel something).

If it is someone else whom I don’t have a close relationship with, I tend to burn of feelings of guilt with righteous indignation pretty quickly.  “How dare you judge me?  You have no idea what I’m dealing with!” Which is totally true and justifiable.  Funnily, that anger response is not there when someone I do love and respect does it.

Step Two: Speak to the Offender

If someone you love has made you feel awful and they love you back, the last thing in the world that they would want is to hurt you.  I think the best thing you can do is explain to them why what they said hurts and why their expectations for you are too high.  So many people do not get how horrifically painful endo can be.  It’s not your job to do the emotional labour of trying to educate them, but too often we have to anyway.  See if you can make the pain relatable for them.  Give them an “objective” measure people can understand.  All people tend to accept broken bones, childbirth and being kicked in the testes as very painful experiences – can you relate your endo to that?  If they are more of a visual person, can you describe the pain through imagery?  “It’s like being burned by a really hot fire.  It’s like I have pins and needles in my ovaries.  It’s like someone is stabbing me with a fire poker and gradually trying to drive it right through me.”

If you are the one you are making feel guilty, sit yourself down and frown at yourself.  You know how painful this is.  You know what your body can and can’t endure, and how pushing yourself on Thursday will break you on Friday.  You know the consequences of trying to go beyond your limits, dammit!

Step Three: Reassess Your Standards

Most of my guilt comes from a failure to meet a standard I expect of myself.  This is because I still expect as much of myself now as I did when I was healthy.  If you told me to go out the door right now and run 5km, part of me would probably go “Pfft, I can run it while carrying you on my back,” because I could before I was sick (not the carrying part.  Just the 5km part).  Now I’ll be lucky to manage a single kilometre before something gives out – it’s a lottery as to what.  Trying to remind myself that that is ok and it is not a failure is really hard, but so important.  I wouldn’t expect someone else with my condition to do it, so why on earth do I expect it of myself?  We can be our own harshest detractors.

Talk to the people in your life, as well.  Explain that you have a permanent and debilitating condition and you can’t do all the things you used to.  Make it clear that you won’t simply recover and be back to your normal, healthy self.  That’s gone.

Step Four: Cut Your Losses

If there is someone in your life who is consistently unsupportive and does not believe you, you will eventually come to a point where you realise that you can’t win them over.  If you reach that point, cut them out.  You have enough to deal with and enough people to keep up with already.  You don’t have the time or energy to be wasting on people who don’t have your back.  This is really hard when it is someone you love (or feel you ought to love) really deeply, but realistically, the alternative is to let them continue to wear you down.

It is also hard when that person is someone you have to associate with constantly anyway, such as a colleague.  If they become outright rude, report them to HR or to your supervisor.  If they just stay at the passive-aggressive level, work on developing a shield against their taunts.  It’s like the old adage, those that matter don’t mind, and those that mind don’t matter.  The ones who believe you and support you are your friends.  The ones that don’t are not.

Step Five: Recognise It Is OK

It is ok to be passionate and advocate and educate about this disease.  It is ok to take the time you need to rest.  It is ok to cry and to require medication, and to feel pain even if someone else feels more pain.  It is ok to have new standards.  It is ok to not hate yourself for living a different life.  YOU ARE NOT TO BLAME FOR WHAT YOU CANNOT CONTROL.  You did not ask for this disease or the incapacity that travels with it.  You cannot control it.  You cannot control the fact that you now need different things, and that is ok.

Do unto yourself as you would do unto others.  If your best friend, or your partner, or even a total stranger, was in your shoes right now, would you berate them for not doing the washing up?  Would you tell them they are not good enough because they couldn’t go to work today?  You would not.  You would have compassion and empathy.  Have a little for yourself.

 

So, that’s my five-step anti-guilt programme.  Does it actually work?  Eh, sometimes.  Sometimes I can’t escape the guilt and cry on my husband and then feel guilty for making him look after me and dry my tears, and the cycle begins again.  But I’m trying, all the time.

What makes you feel guilty with your endo?  How do you deal with it?  What do you say to others who judge you?  Let me know in the comments!