Instead of silence, ask someone with a chronic illness lots of questions

If I decide to share the details of my chronic illness with someone, the worst thing that someone else can do is respond with silence.

Many of us weigh up the decision to keep quiet about how hard each day can be – but it tires us – it weighs us down slowly, and the knowledge that this illness will never leave you bores into your mind.

So keeping silent when you ask someone how they are and they take the decision to answer – that denies the person who is unwell from sharing further information with you. It makes them feel guilty for trying to lighten their load.

What you should do instead

When we share a detail about our pain. I implore you, don’t feel embarrassed or feel pity – many of us have come to terms with our illnesses, we need those of you around us to come to terms with it too. To not feel abashed when we’re obviously in pain. We remember the silence from others as equally well as those moments where someone takes the time to ask.

We remember those moments when someone takes an interest because they are the moments of relief that keeps us going through the day – the idea that someone near us understands, however briefly.

Even if hearing the details of someone else’s illness does make you uncomfortable for a short while, what is your short term discomfort compared to the long term discomfort of your friend or loved one?

I realise that it’s very hard for others to listen to the fact that we are always in pain, and that pain and fatigue is never going to go away, but I and many others have come to terms with it, and we need those around us to recognise that and understand that most of the times we have things under control.

The right response is to ask questions. Someone who is chronically ill will rarely tire of answering questions about their illness. Believe it or not. I love it when someone has the presence of mind to ask me something about it. To make an effort to try to understand, however small. We often feel burdened by all the detail of our illness, how it weighs down on our minds quietly, while everyone else lives around us happily, or has much smaller, manageable problems we’d vastly prefer.

Give those around you who are chronically ill the opportunity to share the details of their illness by asking questions – listen carefully – remember what they tell you and think of ways that you might be able to help given the context they have given you.

Why you should do this

It’s extremely difficult to talk about our illnesses. We are often burdened with pain or fatigue. These factors have a habit of muddling our brains, so often when we do get a moment to talk about our experience freely, we feel so rotten it’s hard to put it into words that will make sense to someone who’s not chronically ill. It’s also very hard to do this at the best of times without feeling like you’re complaining.

Put this together with the fact that if you have endometriosis or another invisible illness, then you look the same as everyone else, you don’t look sick and your features often won’t give away how sick you really are.

Talking about illness is one of our most important coping mechanisms, precisely because we have no visible symptoms. Denying our best method to describe our difficulty makes a hard day or week even harder.

A sad truth

When someone greets us with silence it makes each subsequent contact with someone else that much harder. When you’re always ill you start to notice that people ask you how you are less, remembering the one occasion they actually asked for a truthful answer, they avoid doing so again and by doing so make things even harder for that person who is chronically ill.

Worse still you start to become known as that person who is chronically ill rather than a 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 utterly deserving of your time and admiration and not your sympathy.

Some good questions to ask

I personally adore any of the following questions:

  • Can I help you with that? [applies to a specific thing I am trying to do]
  • What symptoms do you have today? Pain, fatigue, nausea?
  • Can I make you something to eat or drink?
  • Would you like me to carry or move that for you?

These are direct questions that have a simple, obvious answer, they’re very easy to respond to, which gives the person asking the question the ability to feel like they are contributing to helping the person involved, and gives us the help we need. It’s the little questions and little actions that add up and get us through the day.

What we are usually asked

  • Are you okay? I noticed that you’re in pain
  • Oh, do you have back pain?
  • Can I help you with something?

These sorts of questions, while well-meaning are the sorts of things we’re asked the most often. They’re either vague enough to make them difficult to answer truthfully, or questions that force us to answer in a certain way, leading to neither party getting the chance to really offer help or receive aid.

Things I wish more people said to me if questions are too hard!

  • I really appreciate you coming along when you’re not feeling great. It’s good to have you here.
  • I know you’re not feeling well, but thank you for making the effort.
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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.

12 responses to “Instead of silence, ask someone with a chronic illness lots of questions

  1. This is a wonderful post with great, practical suggestions. I’m glad I found your blog! I shared this on my Facebook page: http://www.facebook.com/TheCrohnsDiaries (a page about living with inflammatory bowel disease). There’s nothing worse when you’re sharing something and someone you love just looks away or stares at you in silence. It’s embarrassing and I’m glad you wrote so eloquently of how others should talk to the chronically ill in their lives. ~ Christina

    • Thank you, I’m really glad you found it helpful. I’m particularly keen for all of us to learn about different chronic illnesses, so it was a long term goal of mine that people who have illnesses other than endometriosis would find my website helpful, so glad to hear that has been the case!

  2. This is very good information. I just wrote on this topic – more a reflection than suggestions. I’d love my readers to see this. Would you post a comment on my blog about this?http://workingwithchronicillness.com/2013/02/do-people-judge-your-book-by-your-cover/

    Rosalind Joffe ciCoach.com

  3. Pingback: Newsround 1102. | Project: Endo

  4. juliasarahelizabeth

    Its like you looked inside my head and hit the print button! I will defintely be reading more:)

  5. KL

    Ah, but there is a fine line when it gets to questions like “is it genetic?”, “you’re not planning on starting a family with that are you?” And so on. I had some of those at a party and I blanked the questioner because I was so shocked.

    • Totally so. Perhaps it’s the type of person I am, but I like to challenge people when they feel it’s appropriate to ask inappropriate questions like that. General rule of thumb – is it something that’s appropriate to ask someone else that’s healthy? If not, I ask people to keep those sorts of questions to themselves.

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  7. Hi i want to thank you all the information you are providing. It has become a lifeline for me. I am struggling. I was finally diagnosed with endometriosis in 2006 after having a laparoscopy to drain an ovarian cyst which showed up on a scan. The cyst was a endometrial cyst (chocolate) & could not be drained but needed removing & my ovary was now attached to the back if my bowel. I waited 13 months housebound & on morphine for a radical hysterectomy. I was told i was cured but i still had a significant amont of pain. I have been taking pain relief medication since then and this kept it under control until this year. Now i know that the endometriosis has come back or maybe was never remedied. Unfortunately people take the attitude even some GPs that i ‘ve had surgery so must be cured & its hard to be patient cos what are they saying? that you’re imagining or making the pain up.
    I have other health problems & need a walkin stick & people have commented ‘well uf it makes you feel better’ i hate having to have a stick. Last year whilst hanging out some washing, (without my stick i thought it would be okay to just nip into the garden for a minute) i overbalanced an turned my ankle over. After screaming for help someone found me & called an ambulance. I had 3 fractures my ankle was dislocated & my bone was sticking out of my flesh. I had nightmares reliving it. I had plenty if get well cards & visits after 2 ops & two weeks in hospital which really helped to boost me. Now however i have so much pain with mycendo my ankle still my back cos i’ve got a vertaebrae out & osteo- arthritis inflammation of my hip joint which has been diagnosed as somethin bursitis which im worried could be due to the endo, but i look fine & tell people who ask that i am because i know people dont really want to hear it & i dont want to be thought of as a hypochondriac.
    My daughter has now been diagnosed with endo. & has been struggling to work one day a week whilst going college. A job vacancy came up recently & she cried because shes now qualified but not well enough to hold down a job. She has had laser treatment & is no better we both read your column. & it really helps. Thank you

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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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