Learning to manage people’s expectations when you have chronic illness

The hardest concept to explain to people about endometriosis is the fact there’s a good possibility that I am not going to fully recover.

I have come to terms with this, in fact chronic pain management generally concedes that you will experience some pain going forward, and never be completely rid of it. However societal norms make the aspiration of “becoming well” the overriding goal of those around you.

This is because acute illness (illness that has a beginning and end) forms most of the understanding of an averages person’s understanding of illness.

Cruelly some can even relate to terminal illness better than chronic illness. There’s a arc to the illness that makes sense – that is finite.

As such as I hear many of the same platitudes I tend to hear time and time again from people. I want to talk to you very matter of factly about what I think about each of them.

You’re so young, you have nothing to worry about

As if somehow my age makes the burden of chronic illness easier. I am getting remarkably good at hiding how sick I am some days. It’s frankly insulting to think that someone else’s life is easy simply because of their age.

I have an incurable disease that will be with me (in some way) for the rest of my life. I’m willing to bet that I have more wisdom from my years alive than others give me credit for. I’ve had to dig deeper much earlier than most. All the roads that were open to them at my age are doors I have had to beat down, and I pay for every single one.

Go to the doctor they’ll fix you up

I genuinely miss the time when I could go to the doctor and get a definitive resolution to something. This isn’t a complaint about my doctor of course. I’m on a good and responsive road to treatment, but years of illness have taken their toll and I’ll never be the person I was without endometriosis.

My body has had to re-adjust to living with chronic illness. It’s become used to it. It can tolerate the pain and lack of energy to some degree. To the point that the pain that would have floored me two years ago has become a new sort of normal.

With that in mind what can a physician really do to dent something I have already become acclimatised to?

I can’t shrug off endometriosis anymore. I’ve had all the surgery I can have for now, I am on all the right medicine, what more is there to do? Realistically all I can do is turn to face it and get on with my life, find new ways to get on, to open those doors rather than painfully strike them.

Just wait until old age if you think this is bad

Yes I am sad to say someone has said this to me, and it did hurt. The very group of people I’d expect to understand chronic illness (the elderly) do occasionally find the extent of my illness hard to believe.

In many ways I already have aged. My body has failed me decades before it should have. I have the strain and burden of old age already lapping at my heels, urging caution every day instead of excitement.

I have to be careful about how much I carry, how far I walk. My muscles and limbs ache from the strain of holding my body to avoid pain. Some days sitting hurts, lying hurts, thinking hurts.

I have to live with none of the visual cues that tells someone that I am unwell. No wrinkled face to indicate I need a seat, no cane to indicate I am struggling. I get on with life invisibly.

A final thought

It’s rare that I would share these thoughts with people who have said these things to me, but I do think it’s important to vocalise these sentiments, to discuss them rather than let them gnaw away at my insides.

It all goes back to learning to forgive the fit people in your life. These thoughts have come from others because of presumption. Raise awareness of your illness and these presumptions about endometriosis will disappear.

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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 “Learning to manage people’s expectations when you have chronic illness

  1. Dawn

    SO BEAUTIFUL, THIS BROUGHT TEARS TO MY EYES. THANKYOU FOR SHARING. HUGS ENDO WARRIOR.

  2. How true everything you wrote is. I have hd Endo for over 30yrs. It is horrible when you make plans in advance and just mins before you are on the floor in pain

    • 30 years? I am so sorry to hear. I hope that with time we will find more and easier ways to cope – the length of time you have managed with endometriosis gives me great hope for the future. Thanks so much for commenting 🙂

  3. Bree

    ugh this brought me to tears too. I’ve had endo for 4 years (I’m 17). It sucks when I get invited to fun things every weekend and I have to say, no I’m sick. people have just stopped inviting me. It’s really hard for my age group to understand my pain. And one more thing is, “How are you feeling today?” with a big smile like I’m supposed go say, great! When I really feel like dying. This article like read my mind. I’m going to read more now cos I def need it!

    • I’m very touched to hear that so many people have been moved to tears my post. It wasn’t my intention to upset anyone. I suppose that many years into this illness the thoughts in my head no longer upset me in the way they used to, they’ve become normal almost. I can talk about how and what I feel very rationally now, it feels like hugely painful things to say to others, but I’m just so used to it now.

      In short, I’ve come to terms with being ill, and now I want to move through life as best I can.

      I have actually written about the problem with how are you also if you’re interested. Thanks for commenting.

      https://endohope.org/2012/11/07/th-problem-with-how-are-you/

  4. Amy

    One of my close friends shared this and I needed to comment – THANK YOU!!! My friend is new to the Endo fight and has been progressing well in her treatment. I am (i think anyways) one of the few friends she doesn’t feel bad about canceling plans with if she’s having a low day. I also suffer from migraines, and while the pain and issues are much different, I understand how debilitating a disease like this can be.

    • I’m really glad I could help, in any small way, that’s what I am here for. I think it’s really important to talk things through with people (particularly those who are well and not aware of chronic illness). if my posts help you, your friend or anyone else to verbalise these issues, then that’s great.

      Also you sound like an amazing friend, thank you for taking the time to understand your friend’s difficulties, despite your own. You’re one in a million.

  5. Very nicely put. Ive become so bitter towards so many people who don’t understand. Oddly enough my father and brother seem to be the only two who truly get it. I try to educate-I was even starting my own nonprofit. Just for that purpose and began graduate school- now I realize there is no way I will be able to get my MBA as soon as I had hoped because I cant commit to anything more than one class. As for the nonprof-j spend too much time on the feral position in bed and drugged up. I WILL prove that I can earn my MBA but I’m nit as confident about what will happen after

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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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