Care and support are amongst the most important things for those of us living with chronic illness. Whether our illness is mild or severe, we need care and support in different ways and one person may need one kind of support while another needs something else. So let’s talk about what our needs are and let the world know.
For me, the most important way to support me is to make food that I can eat/tolerate and love, which often means using one of the recipes I have created and stored on my Google Drive so it’s easy to share.
What is one best way people in your life can support you, either emotionally, mentally, spiritually or physically?
Let’s share our need for support and care in the comments.
This is weird, but come and change the cat litter when I’m unwell. The professional carers and cleaners aren’t allowed to handle pet waste for OH&S reasons, so no matter how sick I am this is a physical task I have to do myself. Its nicer for my beloved cats and I if this is done regularly. Its only been a heroic effort a few times, but its frustrating to use all my spoons on that one task. There are pet valet services, but the staff do it because they like caring for pets when people are away, so they don’t want to come over and just do the tray. There’s a small business opportunity there for someone... I’ve known elderly folk who struggle to care for their pets as they become frail. Emotionally? Send me a text occasionally to check in. Seek me out in a way that’s not demanding. It sometimes feels like I’m slipping out of people’s lives unless I contact them. Its tricky to get the balance right for both of us, but a card or a text says ‘I hold you in heart and mind even when we’re apart.’ Great question, Madelleine. I wish you much delicious food made with love.
Oh of course! I never thought of that as I don’t have pets (unfortunately)! And yes, good business opportunity for someone! I wonder what the rules are in Denmark, hmmm… And I love this one: “Seek me out in a way that’s not demanding” ❤️🌸 I would love that too.
“I hold you in heart and mind even when we’re apart” I love that🥲 I’d hands down come and change your cat litter if I knew that was supportive to you. It wouldn’t even feel like a chore.
I’ve offered to walk my neighbours dog and said I’d be there anytime (she suffers cluster attacks). She hasn’t ever taken me up on the offer as yet, but I meant it. Perhaps I will remind her next time I see her out walking.
Its often hard to accept help. I need to work on asking, but I only ask when I’m desperate & that’s when the possibility of refusal is too high stakes!
Very! And understanding what help we need and when - and then be able to ask for it! I’m getting better. I’ve been practicing. And I’m so proud of myself when I do it. I’ve only ever struggled on alone until this past year or 2.
You’re right, I really like it. Also, the cold triggers my migraines so OMFG. I wear a hat to bed when its less than 17’c overnight or I wake up with a headache. Being seen. Being helped without being seen as useless 💖
In the simplest sense it's watching me and seeing when I'm struggling and making me stop. I get so caught up in the simple process of doing I go inwards and can't see the damage I'm doing by pushing on. I get caught in a loop, especially when in pain. I need someone to say stop, take pills, rest.
Ooh this is a good one! I love it when people help me pace too… well… people who know me and my body well. My parents are often good at this and do it ❤️🌸
For severe migraine my psychologist had me develop a protocol where a couple of trusted people were given criteria and could call me to stop. I couldn’t argue at the time, though I could revise the protocol later. When we’re in struggle we lose our capacity for self insight. It helped, and gave permission for people to call me out without offense and with my permission. “Why don’t you lie down?” Is too easy to fend off with “in a minute”.
I can relate hard to this. Slowing down was one of my greatest challenges - so much so, when I shared this with my audience the other year, I felt physically sick admitting it out loud. I had no idea at that stage that this was common amongst many of us.
I think it’s a major challenge for most of us living with chronic illness actually. It’s such a different way of moving in the world when you’re ill compared to being able-bodied and it’s soo hard to stop,
Absolutely this. I've been meaning to tell the people I love to slow me down and help me breathe and re-center myself if I seem like I'm in pain or struggling. <3 This is beautiful advice.
When I sat with my needs (back in 2018), support was my number one (in addition to generating an income to keep a roof over my head and food on the table).
For me, these two needs overrode any other - so I love what you mention that our needs can be very different from one another.
When I asked my neurologist what support was available to me and he said “there is none”, it shattered my beliefs in the medical system being there to help and support me.
But it meant I knew where I stood and could save myself the continued battle of the 20 years prior. I could step away and look to meet my needs elsewhere.
Around the same time I began to realise that what I needed was someone’s time. I grew up with a limiting belief: “no one has time for me”. It was an unmet need from childhood.
Later, I discovered that the one thing I needed most was emotional support. As well as guidance. (I didn’t need to be told what to do, or what other people’s opinions were which was mainly the landscape of noise I found myself in).
Not receiving emotional support and guidance from a young age has had a devastating impact on my adult life - to the point of burn out, breakdown and chronic illness.
I do believe our physical, mental, emotional, spiritual (and financial) needs are all interlinked. And that many of us live in survival mode in each area even though we are living in such times that we are capable of thriving.
I did have the help of a counsellor which helped me massively mentally and a boyfriend who made sure I had food, clothes and holidays (physical support). This gratefully received and appreciated support was enough In conjunction with me learning to support myself and become some of my own (emotional) support that I needed.
Learning what i needed to get to where I could start breaking cycles (eventually) led to me being able to bring in more of the support I needed the most.
It’s been a difficult lesson to learn that no one person or one system is responsible (or capable) of taking care of my needs. That I am responsible for identifying them myself and trusting myself that I can find ways to meet these needs. Through a variety of means and sources. Not all of them free but a lot of them are.
Such beautiful things here Amber! And I love how emotional support is a basic need, it really is vital for our survival as human beings, I can attest to that.
Emotional support is so important. Trauma informed and chronic illness aware for preference. My psychologist offers me the blessing of being seen. Every “that sounds hard” reminds me that I’m not just weak and feeble and complaining. I trust that they will call me out, if needed. Its good to talk to someone who isn’t being my carer or family member.
Me too, in a totally not boundary violating or creepy way. Actually I alternate between 2, one who handles my general stuff, and one who specialises in chronic illness management.
Thanks for sharing, Amber. I can't imagine what this was like for you, so thanks for sharing, I've learnt more by reading your comment and feel for you.
Thank you, I appreciate being seen, heard and witnessed. I’ve got a little thing in my throat as I type this as to express that one of my needs is to be witnessed is a need I am only learning of today. And to be able to say it out loud, well, that is a whole other thing entirely.
I hear you and see you. I've restacked Madelleine's thread here for exactly these reasons. Raising awareness is about bearing witness, as a caregiver, I know that often the most important thing is to sit with, and in, someone's pain with them...and sometimes try to find something to laugh at when the need arises (dark humour helps sometimes!)....mutual discomfort is another thread of empathy! xo
Sit with me. Years ago, when I was too depressed to do my remote transcription job, a friend came to my house and just sat on my couch for support while I did my work. We didn't talk much, but knowing she was sitting there made things easier.
Provide quality perspective. Provide me untainted explanations of where I might go right and where I might go wrong. To not shower me with praise or drown me with misery and disdain, but to praise when they feel is right and scrutinize when the situation calls for it.
Beyond that, just continuing to strengthen their own resolve and fortitude is a major way to support a friend. Being mentally and physically strong on your own perpetuates the everlasting growth of quality friendship.
I'm fortunate to have the group that I have. Their clarity and willingness to be direct and call things out is what makes me value my friends greatly.
Being not just tolerant but fully accepting and understanding of my need sometimes to "flake" and cancel plans and not be at things and not answer my phone for a while is one of the best ways that the people who love me can support me.
Thanks <3 When I was younger and didn't understand myself as well, I would make plans because I felt obligated or because I wanted to and didn't know my own health/energy limitations and then I would cancel and I'd feel terrible about it and so if the other person said anything at all that indicated their unhappiness with me about it, it really sent me into a spiral. It doesn't do that so much these days ... partly because I am better about being clear about my limitations with both myself and others, partly because when people get upset I'm usually able to understand that's "their stuff" but nevertheless it is so healing and helpful when someone who loves me says, "oh please, don't worry about it, get your rest, take time to heal, what you need right now is more important."
When friends listen without judgement or opinion I feel most supported. Also when they support and encourage my efforts to speak and write about my chronic pain journey!
The easiest way to support me is to offer childcare. Being the parent of a toddler is relentless. We are so lucky to have an active, healthy baby but I won’t say that it doesn’t feel all consuming.
Aside from that— offering a meal or just help meal planning. And conversations that help me remember the parts of me that are often neglected—the curious traveler, student of life, social advocate, artist, adventurer, etc. ☺️
Ah yes, childcare and everything that entails! I love this: “conversarions that help me remember the parts of me that are often neglected…” I so want that too!
Honestly? Check in on me (I tend to go silent when I'm struggling rather than reach out) and come round for a cup of tea and not judge the state of my house.
I'm late to this thread, and know others have already mentioned it, but the most precious gift to me is presence. Sometimes I just want someone to sit with me and watch TV and be there. We don't have to talk. You don't have to solve anything or bring anything or do anything. Sometimes I just want to feel less alone in the world. I want there to be another body on the couch next to me, another person breathing the same air and expericing the same physical space. Often, that's enough.
This is weird, but come and change the cat litter when I’m unwell. The professional carers and cleaners aren’t allowed to handle pet waste for OH&S reasons, so no matter how sick I am this is a physical task I have to do myself. Its nicer for my beloved cats and I if this is done regularly. Its only been a heroic effort a few times, but its frustrating to use all my spoons on that one task. There are pet valet services, but the staff do it because they like caring for pets when people are away, so they don’t want to come over and just do the tray. There’s a small business opportunity there for someone... I’ve known elderly folk who struggle to care for their pets as they become frail. Emotionally? Send me a text occasionally to check in. Seek me out in a way that’s not demanding. It sometimes feels like I’m slipping out of people’s lives unless I contact them. Its tricky to get the balance right for both of us, but a card or a text says ‘I hold you in heart and mind even when we’re apart.’ Great question, Madelleine. I wish you much delicious food made with love.
Oh of course! I never thought of that as I don’t have pets (unfortunately)! And yes, good business opportunity for someone! I wonder what the rules are in Denmark, hmmm… And I love this one: “Seek me out in a way that’s not demanding” ❤️🌸 I would love that too.
“I hold you in heart and mind even when we’re apart” I love that🥲 I’d hands down come and change your cat litter if I knew that was supportive to you. It wouldn’t even feel like a chore.
I’ve offered to walk my neighbours dog and said I’d be there anytime (she suffers cluster attacks). She hasn’t ever taken me up on the offer as yet, but I meant it. Perhaps I will remind her next time I see her out walking.
❤️🌸❤️
Its often hard to accept help. I need to work on asking, but I only ask when I’m desperate & that’s when the possibility of refusal is too high stakes!
It’s soo hard!
Very! And understanding what help we need and when - and then be able to ask for it! I’m getting better. I’ve been practicing. And I’m so proud of myself when I do it. I’ve only ever struggled on alone until this past year or 2.
Wow! Go you! I think that might be a good topic for a newsletter (or did I miss it already?)
I was going to say there isn’t but there’s this one and I think you’ll really like it
https://warriorwithin.substack.com/p/frozen-pipe-dream?utm_source=publication-search
You’re right, I really like it. Also, the cold triggers my migraines so OMFG. I wear a hat to bed when its less than 17’c overnight or I wake up with a headache. Being seen. Being helped without being seen as useless 💖
In the simplest sense it's watching me and seeing when I'm struggling and making me stop. I get so caught up in the simple process of doing I go inwards and can't see the damage I'm doing by pushing on. I get caught in a loop, especially when in pain. I need someone to say stop, take pills, rest.
Ooh this is a good one! I love it when people help me pace too… well… people who know me and my body well. My parents are often good at this and do it ❤️🌸
For severe migraine my psychologist had me develop a protocol where a couple of trusted people were given criteria and could call me to stop. I couldn’t argue at the time, though I could revise the protocol later. When we’re in struggle we lose our capacity for self insight. It helped, and gave permission for people to call me out without offense and with my permission. “Why don’t you lie down?” Is too easy to fend off with “in a minute”.
Wow! This sounds like a great protocol!
I can relate hard to this. Slowing down was one of my greatest challenges - so much so, when I shared this with my audience the other year, I felt physically sick admitting it out loud. I had no idea at that stage that this was common amongst many of us.
I think it’s a major challenge for most of us living with chronic illness actually. It’s such a different way of moving in the world when you’re ill compared to being able-bodied and it’s soo hard to stop,
Absolutely this. I've been meaning to tell the people I love to slow me down and help me breathe and re-center myself if I seem like I'm in pain or struggling. <3 This is beautiful advice.
As always, great post!
When I sat with my needs (back in 2018), support was my number one (in addition to generating an income to keep a roof over my head and food on the table).
For me, these two needs overrode any other - so I love what you mention that our needs can be very different from one another.
When I asked my neurologist what support was available to me and he said “there is none”, it shattered my beliefs in the medical system being there to help and support me.
But it meant I knew where I stood and could save myself the continued battle of the 20 years prior. I could step away and look to meet my needs elsewhere.
Around the same time I began to realise that what I needed was someone’s time. I grew up with a limiting belief: “no one has time for me”. It was an unmet need from childhood.
Later, I discovered that the one thing I needed most was emotional support. As well as guidance. (I didn’t need to be told what to do, or what other people’s opinions were which was mainly the landscape of noise I found myself in).
Not receiving emotional support and guidance from a young age has had a devastating impact on my adult life - to the point of burn out, breakdown and chronic illness.
I do believe our physical, mental, emotional, spiritual (and financial) needs are all interlinked. And that many of us live in survival mode in each area even though we are living in such times that we are capable of thriving.
I did have the help of a counsellor which helped me massively mentally and a boyfriend who made sure I had food, clothes and holidays (physical support). This gratefully received and appreciated support was enough In conjunction with me learning to support myself and become some of my own (emotional) support that I needed.
Learning what i needed to get to where I could start breaking cycles (eventually) led to me being able to bring in more of the support I needed the most.
It’s been a difficult lesson to learn that no one person or one system is responsible (or capable) of taking care of my needs. That I am responsible for identifying them myself and trusting myself that I can find ways to meet these needs. Through a variety of means and sources. Not all of them free but a lot of them are.
Such beautiful things here Amber! And I love how emotional support is a basic need, it really is vital for our survival as human beings, I can attest to that.
Emotional support is so important. Trauma informed and chronic illness aware for preference. My psychologist offers me the blessing of being seen. Every “that sounds hard” reminds me that I’m not just weak and feeble and complaining. I trust that they will call me out, if needed. Its good to talk to someone who isn’t being my carer or family member.
“That sounds hard” is a wonderful thing to say to us 🌸 I feel seen and heard when someone says that.
I know, right? So simple but so many people try to bright side us. I don’t need you to fix this, just acknowledge that its a shitty situation.
Exactly! And I also don’t them them to compare my situation with theirs… I nust want to be heard that’s all.
I love your psychologist.
Me too, in a totally not boundary violating or creepy way. Actually I alternate between 2, one who handles my general stuff, and one who specialises in chronic illness management.
Me too!
Thanks for sharing, Amber. I can't imagine what this was like for you, so thanks for sharing, I've learnt more by reading your comment and feel for you.
Thank you, I appreciate being seen, heard and witnessed. I’ve got a little thing in my throat as I type this as to express that one of my needs is to be witnessed is a need I am only learning of today. And to be able to say it out loud, well, that is a whole other thing entirely.
Being witnessed is one of my main needs too 🌸
Me too & I’m so happy and honoured to witness you both.
I hear you and see you. I've restacked Madelleine's thread here for exactly these reasons. Raising awareness is about bearing witness, as a caregiver, I know that often the most important thing is to sit with, and in, someone's pain with them...and sometimes try to find something to laugh at when the need arises (dark humour helps sometimes!)....mutual discomfort is another thread of empathy! xo
Sit with me. Years ago, when I was too depressed to do my remote transcription job, a friend came to my house and just sat on my couch for support while I did my work. We didn't talk much, but knowing she was sitting there made things easier.
Aawe YES! Sometimes my mom or dad comes in my room and sits quietly looking at their iPad or book and I love it 🌸
It seems so simple, but it helps tremendously.
Provide quality perspective. Provide me untainted explanations of where I might go right and where I might go wrong. To not shower me with praise or drown me with misery and disdain, but to praise when they feel is right and scrutinize when the situation calls for it.
Beyond that, just continuing to strengthen their own resolve and fortitude is a major way to support a friend. Being mentally and physically strong on your own perpetuates the everlasting growth of quality friendship.
I'm fortunate to have the group that I have. Their clarity and willingness to be direct and call things out is what makes me value my friends greatly.
Good ones here too ❤️🌸
I love this thread.
Being not just tolerant but fully accepting and understanding of my need sometimes to "flake" and cancel plans and not be at things and not answer my phone for a while is one of the best ways that the people who love me can support me.
Good one!!
Thanks <3 When I was younger and didn't understand myself as well, I would make plans because I felt obligated or because I wanted to and didn't know my own health/energy limitations and then I would cancel and I'd feel terrible about it and so if the other person said anything at all that indicated their unhappiness with me about it, it really sent me into a spiral. It doesn't do that so much these days ... partly because I am better about being clear about my limitations with both myself and others, partly because when people get upset I'm usually able to understand that's "their stuff" but nevertheless it is so healing and helpful when someone who loves me says, "oh please, don't worry about it, get your rest, take time to heal, what you need right now is more important."
I love this. And I so relate. Having someone being super understanding about our need for rest is vital.
When friends listen without judgement or opinion I feel most supported. Also when they support and encourage my efforts to speak and write about my chronic pain journey!
I love this, and so relate to both of these 🌸
The easiest way to support me is to offer childcare. Being the parent of a toddler is relentless. We are so lucky to have an active, healthy baby but I won’t say that it doesn’t feel all consuming.
Aside from that— offering a meal or just help meal planning. And conversations that help me remember the parts of me that are often neglected—the curious traveler, student of life, social advocate, artist, adventurer, etc. ☺️
Ah yes, childcare and everything that entails! I love this: “conversarions that help me remember the parts of me that are often neglected…” I so want that too!
Honestly? Check in on me (I tend to go silent when I'm struggling rather than reach out) and come round for a cup of tea and not judge the state of my house.
This is a good one, I can so relate, I think most people with chronic illness can 🌸
I love that photo so much. It made me cry. I just had a good 5 minute cry thanks to that photo. Thankfully, I cry easy.
❤️🌸❤️
Wash & change my sheets! Text me funny or cute things & just check in. Also, I’d love a foot massage!!😁😁😁😁
Changing sheets is so important! And foot massages! My mom gives me one once in a while and it’s bliss 🌸
I'm late to this thread, and know others have already mentioned it, but the most precious gift to me is presence. Sometimes I just want someone to sit with me and watch TV and be there. We don't have to talk. You don't have to solve anything or bring anything or do anything. Sometimes I just want to feel less alone in the world. I want there to be another body on the couch next to me, another person breathing the same air and expericing the same physical space. Often, that's enough.
I so agree with this!
Financially.
Yes! That’s a big one!