‘How are you?’ – The Complex Question for People with Chronic Illness
September 5, 2016 8:47 am‘How are you?’ That short little question can sometimes be such a loaded one for me. It’s a sentence that we often use in everyday conversation, but it is one that so many of us struggle to answer honestly.
As a society, we are so uncomfortable with pain (other peoples and our own) that sometimes the question is even answered for us, before we even get chance to respond!
‘How are you? Well?’
Today’s experiences have shone a light on the fact that those three little words can trigger so much within me, especially if I am in the midst of having a particularly tough time.
A friend I haven’t spoken to for quite a while messaged me earlier on whatsapp. It was a simple, friendly message. ‘Hey Em. How are you?’
I haven’t been able to bring myself to respond as yet. Not because I don’t want to – it was lovely to hear from her, just as it is from any of my friends who get in touch. But I didn’t know what to say. I can’t bring myself to type a response that contains the words ‘These last few months have been really, really tough’ or ‘I’m struggling’ or ‘Things are pretty shit right now and I’m having to dig deep to get through each day with hope’ or simply ‘I’m still unwell’.
It all just feels embarrassing and awkward and basically not what I want to be saying at all.
What saddens me, is that despite the healing I have done around self acceptance and self love, there is a part of me, that feels a sense of shame. Shame around illness. Shame around actually telling people that I am actually finding life particularly challenging right now. I guess theres a part of me that doesn’t want to risk sounding negative when answering the ‘how are you’ question.
This then raises the questions within me….Why the shame? Why the embarrassment around struggle?
I know on so many levels that life happens. It is full of light and dark. Good times and bad. Suffering is part of it, and we should for no reason feel ashamed of that. Consciously I know this. But somewhere within me, shame around illness and also emotions we label as negative, remains there none the less and pokes it’s head up during the toughest of times.
It’s as if the passage of time somehow means that we should be well after a certain time frame. It’s okay to be sick for a few weeks, a few months even, but years? People struggle with that. They don’t know what to say, or what to do.
Notice how often during the first few weeks of being sick, say if you have had an operation or something, people send cards and flowers. Then, as the weeks go on, all that stops. Often this is appropriate because people then go on to recover. But what about in Chronic Illness? Of course I’m not suggesting that cards and flowers should be sent every week to someone indefinitely, that isn’t realistic, but acknowledgement of whats going on, and small gestures no matter how many months or years have passed…are so appreciated.
Pretty handmade card I received last week from my beautiful friend Clare.
I visited my uncle earlier today with my Mum to drop something in. It wasn’t apparent externally that I was struggling to sit upright. That the exhaustion was crushing and it had taken a lot of willpower to even leave the house. He wouldn’t have known that I hadn’t driven my car there, and indeed haven’t driven my car at all for a number of weeks, due to intense visual disturbances and my brain not quite working as it should at the moment. None of that is apparent. At all. Because during any times I can leave the house at the moment, I pop my make up on, and a smile, and can just about get through half an hour before having to lay down again. So much is hidden.
On top of the physical, as many of you know, the emotional stuff that comes alongside chronic illness, is another layer that makes every day life tough. The feeling of missing out on huge chunks of life. Letting people down. Not being able to make plans. Spending huge amounts of time isolated due to the vast amounts of rest you need. The gaps in your life where a career should be, or travels, or relationships. The constant reminders of live moving on for those around you, with new babies being born, weddings happening, various adventures. Your life in contrast feeling very much on hold. The feeling of responsibility that it’s down to you to find a way through all of this and the hovering background uncertainty of not knowing if, or when, things will improve.
So when my uncle asked ‘how are you?’ I kind of just clammed up. Then I said. ‘I’m okay.’
I’m so far from okay. But I couldn’t bring myself to say anything else. I couldn’t find the words. How do you convey any of the above, which actually only just touches the surface, in to some sort of response that doesn’t make you sound terribly sorry for yourself but is at the same time open and honest?
I am yet to figure this out.
I also know there is a time and a place to pour your heart out to people and times when it is less appropriate or necessary. Splurging out your life story to a stranger in a shop isn’t the healthiest way to go about things! I’m also aware that psychologically and energetically speaking, in terms of raising your vibration and healing, immersing yourself in ‘illness talk’ isn’t something that is necessarily a good thing at all. However, I also thing we need to bear in mind the importance of balance and allowing room for self expression. For example, around family and friends, not being open about how we feel, can feel really uncomfortable and inauthentic.
I’m sharing this with you today, despite it feeling incredibly raw and personal, because it feels important. I feel like some of you might relate to this, and if you find yourself feeling the same way about the ‘how are you’ question, you really are not alone. I would love to hear about your own thoughts and insights around this, and if any of you have any ideas around how you personally deal with questions such as these. Ill look forward to chatting with you in the comments section.
I for one, am spending some extra time on self acceptance and self love meditation’s this week. Its strange how prolonged periods of illness and setbacks can trigger these vulnerable spots within us isn’t it?
With Love,
Emma x
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Categorised in: Emma's Journey, Healing resources, ME/CFS
9 Comments
It is so, so hard, and although a lot of it lies in our own feelings of shame and guilt, a large part of it also comes from the fact that the question itself has become a simple pleasantly, something we are expected to ask (and answer) in polite conversation in a particular way. You get asked how you are constantly, heck I even ask people how they are when I call them from work, and I don’t even know them! Now, I hasten to add that as someone who knows what it’s like to be chronically ill I actually love it when people take the opportunity to open up and share what’s going on with them when asked, and I have had some interesting conversations that way, but the reality is that most of the time it is simply a pleasantry.
I think the key to all of this is in finding the right places to share… So if you know someone will react negatively to you sharing openly, then don’t do it. Have a “canned response” that says “I’m okay, life is tough, but I’m dealing with it.” That way you avoid the simple “I’m okay” that implies there is nothing wrong, but you’re not going into too much detail. If the person wants a simple response, they will leave it at that. If they care enough to ask further, tell them more 🙂
Also, use your blog and your social media circles to get out what you need to get out, so that it isn’t all pent up inside you and you can feel okay giving those simpler responses. Because you know that even if you’ve had to cover up how you feel for some, there are others who see you as you are.
It really is a difficult situation, but please, please don’t make it harder for yourself by feeling guilt and shame xx
Hi Amanda,
Thanks so much for sharing your thoughts around this. I think its something so many of us experience isn’t it? You’re right, it often is a simple pleasantry isn’t it, the ‘how are you’ phrase. And thats okay…..there is a time and place for opening up. Like I said in my post, spilling out your life story to the lady behind the post office counter isn’t really appropriate is it.
But I do think its important we find a way to express how we feel and whats going on for us, in a way that feels healthy and comfortable, with those close to us.
You’re advice around having ‘canned responses’ is really helpful. I’ll remember that. I also agree, that it depends on the time and place as to what you may respond with.
Sending lots of love to you Amanda.
Emma xx
Hi Emma –
I used to struggle with this earlier on more so than I do now but I know JUST what you mean about that question promoting shame. I felt that when someone was asking me, they were expecting me to tell them about my progress and when there wasn’t any or I had actually regressed, yes I felt ashamed about that. I wasn’t getting an A+ at “HEALING” so I felt like I was failing and it must be my fault. This is so very common with perfectionists, right? Also, people like us who tend to be rather sensitive and perceptive pick up on the unspoken expectations of others. And we don’t want to see their faces when they know we are suffering.
So… there have been a few things I’ve learned from different key people along this journey. The one I often stop and remind myself of is from Dave Markowitz and that is …… “We are not responsible for someone else’s feelings”. This allows me to let other people feel whatever pain, discomfort or disappointment that they feel. I don’t have to be the buffer to make sure they aren’t ever uncomfortable when they look at me or hear that things aren’t in alignment with societal expectations. That also goes hand in hand with allowing feelings in general. You must allow your own feelings to be as they are without judgement but so must you allow those of others. It’s uncomfortable because it’s ingrained to feel responsible but we just aren’t. Nobody can learn and grow unless they face their own shit. You hinder growth in someone else when you try to protect them from their own reactions in life.
Second…. Arguing with reality only causes pain. You aren’t fully well yet. The idea that you SHOULD be is an argument with reality because you WOULD be fully healed if you were supposed to be. Because you aren’t yet, there is no SHOULD about it. You just ARE where you ARE and that’s exactly where you SHOULD be. If you can embrace that and know it in your bones then the shame about not being somewhere else might dissipate. You cannot control the wind, you can only adjust your sails, right? So don’t be ashamed that the wind is blowing you all over the ocean right now. It just is for now and you are doing an incredible job at working those sails even when you don’t feel like you are.
Sometimes I’ve felt like I have learned my lessons already and shouldn’t I just be getting on with life? I mean how much more shit do I need to learn, right? But then I’ll land face down in something yucky and be lost for a minute and after I’ve brushed myself off I see the purpose of the fall. Sometimes it’s to fine tune what you already know. Sometimes it’s to bring you back from veering off the path when you weren’t aware you were drifting. It’s always a gift in the end even though it feels like punishment during.
My canned answer to the “how are you?” question lately has been this….. “I’m doing better than ever mentally, emotionally and spiritually but physically I’m still in the process of healing.” I can’t always direct my body to do what I want it to but I have great power over my mind. If I stay in a place where I’m kind to myself more often than not, where I see my power in spite of my physical imperfection, if I make an effort every day to stay in alignment with something positive in myself while still allowing a bad day here and there then I AM doing better mentally, emotionally and spiritually than ever. And just that statement alone seems to manifest itself and I find that I can catch myself from falling to dark places quicker and stay in neutral or happy places more often.
You are healing Emma and no matter how long it takes, it’s a worthwhile journey. I remember hiking through this beautiful slot canyon in Zions National Park in Utah many years ago. It was 17 miles through the Virgin river and it was gorgeous but I was so focused on getting to the END of the hike because we had to finish in one day that I didn’t take much time to look around me and enjoy the actual trek. I wish I had been less focused on the end and instead been more aware of the beauty of the journey. It was rocky, and slippery and I fell on my ass so many times but there were hummingbirds and moss waterfalls and natural landscape that probably had so much healing energy within it. I only saw it in the blink as I moved on by.
You might not be fully healed yet Emma but you are incredible and beautiful and strong and resilient and compassionate and so unbelievably human. You are not less because of this illness, you are MORE and your physical incapacity has caused you to gain strengths in other areas that will serve you in ways that cannot be diminished.
As I’m writing this, it’s as much for me as for anyone else. That’s why writing is so great because it’s a way to give clarity and remind ourselves what we really believe. I appreciate your blog so much and that you share these feelings. They always inspire something positive in me, especially when you express the hard stuff. Thanks for being you Emma, you are wonderful.
XXX
Hi Teresa,
Wow. What an insightful and lovely message. Thanks for taking the time to write all of that and thank you so much for your lovely supportive words.
The shame thing, its a strange one. Brené Brown writes about this a lot in her book, The Gifts of Imperfection. (I may revisit that book actually!) and she speaks about how it is an underlying theme in so many of our lives. Often underlying many other patterns and beliefs without is even really realising, especially the ‘Im not good enough’ one that is so common amongst so many of us. Ive done so much healing around all this, but at certain times, such as last week when I wrote this post, it creeps back in. I guess when we are feeling at our most vulnerable is when these things resurface isn’t it. It is just an opportunity to shine a light on whats going on for us, embrace it and be curious about our thoughts around it I guess.
I loved what you said about your canned response. “My canned answer to the “how are you?” question lately has been this….. “I’m doing better than ever mentally, emotionally and spiritually but physically I’m still in the process of healing.”” – Brilliant!! Healing isn’t just physical is it. At all. Its so wonderful to acknowledge the other areas too, and a really lovely, honest, yet real way of answering the ‘how are you’ question.
Thanks once again for all of your amazingly supportive words. So appreciated Teresa. You are a lovely soul.
Emma x
Hi Emma,
I totally get it. And it is so good to hear you saying the same when I know how much work we have both done/ are doing on our healing journey. My heart sinks just like that when I get the ‘how are you? text. It usually flummoxes me/ makes me angry. How am I going to answer that? Sometimes I want to chuck my phone away and shout! Like you I don’t want to sound moany but like you I want to stay real. I have had to work at the shame around being ill and have come a long way, but it still gets to me sometimes. I have one friend who particularly does not like being told anything except bright and sunny cheeriness, and was of the but she has recently taken to just texting ‘thinking of you. Sending love’ which seems miraculous and wonderful to me. He did she get there? I don’t know but am grateful for it. Maybe it’s other people’s problem to sort not ours?
I think to be honest the bald ‘how are you text?’ Is lazy and not worthy of a real friend. I think my best friends have realised its not helpful and don’t ask but chat about other stuff instead which I prefer. To the ‘how are you’ I now either reply ‘how are you?’ Or text about something different or ignore it. I have chosen my honoured friends whom I tell the honest truth to and the rest can go jump. I know telling them won’t help me so I don’t. I think the shame thing is complicated and so wrapped up in how we want to live our lives compared to how we are, the stuff we are missing, sadness, grief, frustration etc. I try to be kind and treat it as ‘just sadness/ grief’ and let them flow and go, instead of getting into blaming myself. I can’t tell you how much your honesty helps me and I’m sure others. Things like this get particularly tough in tough times, which we all have. Sending you friendship and best wishes for better times. Thank you xx
Hi Kate.
Im glad you resonated with my post but sorry to hear you are going through the same kind of stuff! I’m glad I decided to publish this post in the end, because it’s nice to know we are not alone with it isn’t it? We need to remind ourselves I think, that those of us who are close to us, really understand where we are at, even if we say ‘Im okay’ and the others – does it really matter what they think? The main thing is is that we continue to heal, and also I think, that we are true to ourselves. Being honest and open, as much as I can be, is definitely the way I want to be – although of course there is a time and place to share things!
I am totally with you about your views on the shame thing. It comes in with us not being where we would be if we were fully well. Our live has taken a different turn for now, and I think treating ourselves with love and self compassion is the only way to go with this.
Sending you tons of love, and thanks again for writing such an honest, heartfelt reply to this blog post.
Emma x
Hi Emma…well? It’s Phil your mum’s friend. Your blog is exactly right in many aspects.
I’ve had some personal experience of what you’ve written because as you may know, I had major surgery three months ago. What Ive found is that some people will dispense their responsibility towards you with a card or a visit but as you said that’s it. However it would be wrong and inaccurate to tar all my friends with the same brush as some have been incredibly supportive throughout my ordeal and indeed afterwards, your mum included.
Another aspect you’re right about is that most people take what’s presented to them as the real you, so don’t go any deeper. I found this difficult cope with at first but have realised that most people we interact with are casual acquaintances at best. I suppose we eventually find out who our real friends are but such a process can be difficult.
I must admit, that since my operation I’ve been more straightforward with the ‘how are you?’ question. I also would encourage you to be the same Emma. I think most of your real friends do really want to know how you are and the ones who don’t aren’t really worthy of your concern.
Finally as one writer to another can I say your blog is well written. You get your point across which is the main thing.
Well done Emma.
Lots of love
Phil Dawson x.
Hi Phil,
So lovely to see you here on my blog! Thank you ever so much for your comment. I’m so sorry to hear of your recent struggles Phil, Mum has kept me updated and you are going through so much right now. I am sending you my best wishes and thinking of you.
In relation to your words above, I think being straightforward as you advised, is definitely the way to go. Being inauthentic just doesn’t sit right with me, as much as that sometimes triggers. Which is why I think I felt so uncomfortable when I said to my uncle that I was okay when I really wasn’t! the issue there, was with me and not him. It was down to me to be honest in my answering. The experience of illness shines a light on so much, and is such an opportunity for growth isn’t it. Thank you also for your compliments regarding my writing, that is much appreciated.
See you soon,
Emma x
Hi Emma.
Nice to hear from you and thank you for your best wishes. Yes things are difficult at present. But a few days at home in my garden relaxing have helped immensely.
Interestingly, whilst having my lunch Ive had a different comment directed at me regarding my state of health which requires no response from me whatsoever.
‘You’re all right ‘.
I’ve heard this remark several times before but at the moment anything which requires nothing by way of reaction is acceptable.
Hope you’re OK Emma.
I’ll be seeing your mum on Wednesday.
Best wishes
Phil D x x.