Living with an illness or condition such as ME/CFS/Long Covid that is invisible to others can be challenging to describe or explain to others. You may have periods of time when you do feel a bit more resourced but there may be other times where it is helpful to have a few handy responses available to respond to comments and questions.
It can take a bit of practice to build the confidence to talk more authentically about your lived experience, as there may be fears around how others will view or respond to you. We can't control this but we can re-frame it and consider what is the cost to ourselves of not sharing and what would the benefits be if we were able to be more honest. This is not about making the person asking questions feel uncomfortable, shamed or awkward about not understanding or getting it wrong. This is about giving yourself the space to explore being seen, heard and understood more fully. Practice with people, who you feel you have an established and safe connection with first and work outwards from there. Whilst not everybody will get it, you have choice over what, how much and with whom you share. Remember, these responses are general suggestions, adapt them, mix and match them or if you feel inspired- come up with your own!
1.‘You look well!’
This phrase is undoubtedly well meaning but for someone living with chronic illness it can make your heart sink. Whilst you may look 'ok' on the outside, things on the inside will probably feel very different! You could of course, choose to let this one slide with people that you don't know well or have the capacity to engage with but with someone where there is a more established relationship you could consider saying something like ‘Thank you, I appreciate your kind words but on the inside, I don’t feel that well today or ‘Thank you, it's great to hear that I look well but today my body and mind is telling me something different’ Â
Sometimes even our closest supporters need a gentle nudge or reminder. If you have more capacity to open up, you could always share some of the symptoms or frustrations that you are experiencing: ‘Today, I feel…(fatigued, in pain, brain foggy, mentally low') 'This means that...('I may struggle with breathing/concentration/memory')
Opening up a bit, may help the conversation to run at a pace that works for you, with the other person more in tune with what you might need. Notice the use of the word 'today', This can help you verbalise and express more about what is going on in the present, without needing to go into detail about the fluctuating nature of the condition. Assess whether you need to establish a boundary which would help you to better manage an interaction ‘I can only speak for a short time today as I have limited energetic/mental capacity’ or ‘I’d really like to chat more but holding a conversation is difficult today'
If you are able to work, speak to your employer about making reasonable adjustments in the first instance, to help you manage your workload and related interactions, especially if you are returning to work after a period of absence. The ME association have published a comprehensive guide to support with employment issues (this also covers long covid) https://meassociation.org.uk/2022/10/comprehensive-guide-on-employment-issues-and-me-cfs/
In terms of work relationships and general conversation, it is perfectly acceptable to share with closer peers and colleagues who have a level of understanding and can potentially offer vital support. Choose wisely. If you are in more formal settings e.g you are required to attend meetings either in person or online, you may need to prepare in advance for more brain intensive activities. Practice being a bit more assertive about what you need if possible. 'I may need to take time out of the meeting/turn my camera off for a bit today. I have a lower capacity to engage cognitively and regular breaks will support me to engage more fully'. This is good practice for everyone, regardless of whether you live with chronic illness or not and models good self care to all.
2. ‘You seemed ok or really well last time I saw you!’
This may well be true, as we know the nature of chronic illness means that symptoms can wildly fluctuate, even over the course of an hour or a day, so whilst you may have a really good day or week, the experience is not linear. This is undoubtedly difficult for people to see and understand, so you could try saying something like:
‘Yes, I was having a better day when you saw me last but unfortunately things do fluctuate and today is not such a good day/week’
Many people I work with in my Therapy and Coaching practice struggle with invites to social events, particularly if they need to turn them down, reschedule or adjust engagement levels, so it could be useful to consider whether it would be helpful to share a bit more.
'Thanks so much for inviting me, I really enjoy it when we get together. At the moment, I am still learning about what I can do and what I can't with my illness and my capacity changes. This is hard for me as I really want to engage as I used to but it is not always possible. I also understand that this may seem confusing to others as sometimes I may be relatively well and can seem ok. My symptoms can flare up, often when I push myself and this is frustrating as it difficult to predict what I will have the capacity to do. Sometimes it means that I have to spend more time than normal recovering after an event'
If you feel able to attend some of the event you could add in:
'I'd really like to attend/looking forward to coming along but may need to leave a bit earlier/engage less than normal as social events can feel a bit overwhelming. I am making adjustments where I can to rest and manage my recovery and I'm figuring out what this looks like as I go'
You could suggest an alternative activity if meeting a group setting feels too much:
'I'd really like to see you and wondered if you would be up for meeting for a coffee/walk instead. I find meeting like this much more manageable and it means that we can spend more quality time together'
It might seem mechanical or strange at first but, remember, you are experimenting with different boundaries or approaches, so that you can manage your recovery. Do add in your own flavour and ideas so that it is more 'you'!
3. ‘How are you?’’
This may well be the hardest one to answer as again, there is always the question around whether you should censor your response. This may well require you to ask this question of yourself first before responding, Remember, it's ok to not be sure as it's probably a mixed bag!
With close connections you could say:
‘I'm not having such a great day today…. I need to…(rest/sleep/be alone/to talk)
‘I don’t really know today, I feel a mix of things’
'I pushed myself last week and I am feeling fatigued, so I need to rest today'
'I feel ok/good today but I am going to take it steady to balance my energy'
If you are struggling, with closer people you could also try sharing some your deeper emotions:
‘I find this illness very frustrating as I never know how I will feel day to day’
‘I feel sad and worried as I don’t know if I will ever fully recover’
‘I feel angry that my body doesn’t do what I want it to’
‘I feel lonely at the moment as I can’t socialise like I used to/can’t do my usual activities’
Practice asking for what you need:
‘It would be really helpful if you were patient with me today. I feel like I am navigating many unknowns and this makes it difficult to communicate/describe my experiences but I am doing my best I can with the capacity and knowledge that I have’
Acknowledge people when they may be struggling to understand:
‘Thank you for trying to understand. I can see this is hard for you as you want me to be well. I don’t have the answers right now and am doing the best I can to accept where I am at, so that I can manage my recovery’
4. 'Get Well Soon!
Those of us who live with a chronic illness such as ME/CFS/Long Covid know that there are no guarantees that you will be well any time soon! Whilst there is always hope, this can be a hard one, as this kind of common wish is far more applicable to a short term acute illness such as a cold, where there is a general acceptance that there will be a definitive 'end' or even if it is related to longer term recovery from an operation.
You can always thank the person for their well wishes and just let this one pass but you may wish to share a bit more about the uncertainty of the recovery timeline with chronic illness. You could say, ‘Thank you, I really appreciate your well wishes. Yes I hope I recover soon too. It would be lovely to know when but I don’t know with this particular illness when or if that will be possible at the moment'
5. ‘My friend had (Long Covid/CFS/ME….) and they recovered. Have you tried yoga/meditation/supplements/cold water swimming….’
If I had a pound for every time I heard this one, I’d be rich! I made reference to it in my last blog post around Navigating life with Chronic Fatigue and Long Covid. The issue seems to be that in society, we tend to celebrate visible wellness, progress and achievement. As human beings, we don’t like things that are uncertain and we cannot understand. It is important to help yourself as much as possible in your recovery journey. Where capacity/finances allow, considering investigating different recovery approaches may well be beneficial but there is no guarantee that what works for one person will work for another. It takes a bit of time and patience getting to know your own body and what it responds well to, this may also change over time.
So if you are being asked the above you could say ‘Thanks for the recommendation, it's great to hear that your friend recovered. I appreciate you taking the time to think of me. I have heard (nothing/mixed/good things) about that approach and I have considered/not considered/ yet/tried it. Everyone is different and I don’t know whether it will work for me as an individual’.
Or you could say, 'I have found my own approach which seems to be working for me right now, so I am just going to keep things simple and stick with that for now'
6. ‘I heard that (Long Covid/ME/CFS etc…) is not real/in the mind/doesn’t exist’
I have experienced this personally but so many people I work with in my Therapy and Coaching practice, have also shared this. This is related to ignorance surrounding chronic illness in general, not about you- It is perpetuated by a lack of research and understanding. It can feel unnecessary, hurtful and dismissive but it is not your responsibility to disprove or argue against it. You know the truth. If someone says this to you, you have a few choices- firstly, to ignore it, walk away and save your energy and time for the people and things that matter.Â
If you have the energy and feel like gently challenging it, you could make an enquiry:
'I wonder what makes you think that? There is medical proof that it is a real condition. It is poorly understood, very complex and there is no known cure or cause’
You could consider asking:
‘How would it feel if you were going through something so real that no-one could see and no-one believed you? Again, this is not about blaming or shaming it puts the onus back on the person making the statement to reflect upon what they have said rather than putting the onus on you to explain.
The truth is, we will only know the reality of something if we have gone through it and even then the experience is subjective We all face suffering in a different way. If however, the person or people you are speaking with are open to challenging their own perceptions or developing their knowledge, you can encourage them to do their own research via websites such as the NHS, ME Association (which also supports people with Long Covid).
I hope you have found this blog post useful, please share your thoughts or comments below.
If you are living with chronic illness and would like some support to navigate the challenges, I offer 1:1 coaching and therapy both online and face to face. Book a free introductory call here: https://calendly.com/growinyourowndirection
Please note: I am a talking therapist with lived experience of chronic illness. I offer insights and reflections via this blog from my own experiences and through reflections on my work with others who live with a varied range chronic conditions. I cannot offer advice or a cure for your condition but what I can offer, is a safe, confidential space for you to feel seen, heard and validated. I will work with you to explore what is right for you and support you to make sense of own unique experience.
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