What people with chronic illness need part 2
A comprehensive support guide for family, lovers and friends of those who are sick:: ORIGINALLY PUBLISHED ON FEBRUARY 6th 2024
Dear soft heart,
Last week I started this series on what people with chronic illness need - if you haven’t yet read, I suggest reading part 1 HERE first. Part 1 covers my intention with this two-part series, a disclaimer, and most notably, the practical support that people with chronic illness may need. I covered many physical and financial matters that we need help with and that you if you are a support person can help with.
In part 2 here and now, I am going to be going into emotional and spiritual support that us spoonies often need. My hope is that it makes you feel more seen if you’re a spoonie, and more empowered on action to take if you love a spoonie pal.
Emotional support
Now that we’ve covered some major practical support tools, let’s go over what chronically ill people often need in terms of emotional support.
1. Companionship:
The bottom line is that we are often lonely, and isolated. The people in our lives who are not sick and can engage with life fully may not realize that we are longing for connection with them as much as we are, perhaps because they aren’t feeling as lonely or because they are busy in their own day to day that doesn’t include lack and loss of skill, so it’s not top of mind to think about how we must be feeling. So here are some ways to initiate that process:
Ask to watch a tv show with them, especially their favourites or a new show they are really looking forward to watching (this is great to do via distance too.)
Book clubs can also be a really nice companionship idea, if the sick person in your life has not loss this cognitive skill to read, many will have.
Sitting outside in good weather and just being together is nice companionship.
Parallel play may be very nice - doing your own tasks, but being in the same room. You can do this virtually as well via facetime or coworking spaces.
Physical affection, I find that when our bodies are in so much pain, receiving love through hugs, kisses, hand holding, back rubbing, or touch that we actually enjoy is really really nice and relieves the body of pain even just a little. Makes us feel a bit less alone. Yes this can be romantic, but it can be platonic too.
If your spoonie doesn’t feel very good, just stay on the phone with them as they rest with their eyes closed or go in and out of the bathroom.
2. Space holding:
Something I really enjoy is identifying my feelings about the situation of being ill on the feelings wheel.
If someone can hold space for me about what I feel and listen to why I feel that way, and validate like, “wow, I’d feel the exact same way if I was you,” it’s helpful.
I really appreciate when someone makes themselves safe enough for me to not mask my feelings, or my reactions to the situation. Ugly crying to let the fear out for example is really helpful.
Space holding emotional support can also be offered for before, during, and after appointments. Appointment after care may be particularly important. Meaning, you’re there to unpack with your spoonie person how they feel, and what it brought up in them.
^ image source: feelingswheel.com
3. Do your research on your person’s diagnosis
Outside of perhaps illnesses such cancer or dementia, societally, we don’t have a road map for many illnesses, especially complex or complicated ones, what they usually entail, their triggers and their relievers, and social protocols around it all.
Here are some key questions to consider researching or asking them about when you want to emotionally support your sick person:
What makes their condition and their symptoms worse? Is it stress? OK, you know to help reduce stress now. Is it strong chemicals? OK, you know not wear perfume around them. Is it exertion? OK, you know that the least they do, the more they have a chance at not crashing, so you can clean up after dinner and know why it’s important and crucial help.
What makes their conditions and their symptoms better? Same idea here.
What does it feel like to be them on a daily basis? This is where reading memoirs or blogs or checking out social media accounts of other people with the same diagnosis may be helpful. Looking up the symptoms and asking them wow, so I read you get x, what is it like to be you when you experience that? Curiosity here is important.
Being known and heard and seen is one of our fundamental nervous system needs, sick or not. Educating yourself meets that need for your loved one. It makes us feel less lonely when other people know what we are experiencing and have an eye on us.
4. Love people how they want to be loved, not how you want to be loved
This is helpful advice for the entire human population in my opinion, but when you are loving someone who is sick, make sure it’s in their love languages, and not yours. Same for apologizing. What is the person’s apology language?
Here is where to take the quizzes.
Yes they may overlap with yours, but it seems to me as though we miss each other unnecessarily when we aren’t loving people the way they respond most to being loved and just loving them the way we respond to it most.
A note: If you’re one of those people who are like well I like all the love languages, I feel you, but focus on the ones that you feel really unseen and unloved by when they aren’t happening. It’s true, I do love all love languages, but for me if acts of service or words of affirmation aren’t happening, I feel pretty starved and like no one cares about me. I feel less dramatic about the other ones not being met, so I know that those are my top two.
My beautiful mama in the forest, fall 2022, one of her love languages is quality time, thus being together makes her feel loved. I always have to remember that and make sure to prioritize that because it’s not my main one.
5. Check and dismantle your ableist blind spots
Empathy is a skill many lack in our highly individual get-to-your-goals-no-matter-the-cost-to-you-or-your-relationships society. I’d say that some therapeutic and/or self-help spaces also, unknowingly it seems, encourage a lack of empathy when they are encouraging that no one else is our responsibility and we are also not anyone’s responsibility. I’ll define and talk more about how to check in with empathy in the next point. But first, let’s unpack how to spot and dismantle ableist blind spots which can really help emotionally support your chronically ill person.
To spot an ableist belief you want to look for beliefs and ways of thinking and seeing the world that works for able-bodied people, but does not for sick +/ disabled people.
Something like the popular self-help belief that we are only responsible for ourselves is ableist. Here’s why…
This line of thinking works until you are the one who needs help. You can for sure live as though no one is your responsibility and you are no one’s responsibility either if you are able-bodied under capitalism. In fact, you’ll be totally fine, because as long as you can exchange your able body’s ability for profit, you will be financially solvent and thus be able to outsource your entire need network through paid services.
What happens though when your body’s ability can no longer be exchanged for profit? Which means that you are most likely no longer financially solvent and able to outsource your needs through paid services?
This idea, and this practice, of independence and individualism as ultimate self-realization doesn’t work anymore if you are not able-bodied.
Independence is tied into ableism in a way I bet most people would feel uncomfortable analyzing in their own psyches. In fact, the fact that independence is so revered in our culture may be one of the pillars that allows ableism to exist as strongly as it does today.
Ableism says if you are not independent (physically, financially, emotionally), you are less than, you have failed, you weren’t strong enough, you made bad choices, you were lazy, you didn’t work hard enough etc, etc, etc.
It will be highly helpful for your spoonie friend if you question mainstream beliefs that are applicable and work if you are able-bodied in the context of our systems, but fall flat if you are sick. It will augment your empathy. Which leads me to my next point…
6. Check in with empathy
Let me just say it bluntly: it is really hard to tell someone how you feel, let alone how you really feel when you’re sick. It can feel other’ing to be ill. Many of your peers, family, friends or lovers may not be living such intensity and/ or trauma.
A lot of responses then can feel lacklustre when you feel so vulnerable.
Responses like “that sounds so awful”, or “I’m so sorry to hear” end up feeling wildly disconnected and lonely when there’s no good empathy to follow up these statements.
So here’s what we can do for each other and for our spoonie friends:
Put yourself in the shoes of the sick person when they are telling you what they are feeling: I know, it’s a lot. But let yourself go there, imagine it. Feel it in your mind, in your heart, in your body.
How do you think you’d feel? Talk to them with and through this empathy.
That sounds awful and I’m sorry to hear feels flat when you’re suffering.
Something like: holy fuck, you amaze me by how strong and resilient and brave you are. I’d be crumbling under this suffering, I am sure. You must be so overwhelmed and frightened. This powerlessness and grief I am hearing in your voice makes so much sense, and it makes me want to cry, anyone in your position would be feeling this way. I know I would be. You truly do not deserve this pain. It’s not your fault. You’re not alone in this, okay? I am here and I really care.
AND (huge and), then meet some needs.
A response with deep empathy that is connective says this:
I’m going to check on you again in a few hours. I’ll call you in the morning and I’ll stay with you as you explore how this is making you feel. I’m going to send you money for a cleaner to come twice this month. Let me arrange my schedule and next month, I will come over and make you some food for the month. I’d love to watch a show or a movie with you tomorrow night so you feel less lonely, anything you’ve been wanting to watch? I will come to your next appointment with you, let’s prep a question list so you feel less nervous.
^ This is true empathy - being able to feel into how you’d feel if you were them. Let their experience become your experience for a moment. And then offer something that makes them feel like you’re in it together.
We can all do better with empathy. After all, we are all going through the same things, just at different times.
Baby deer kissing, summer 2023, reminding me that EMPATHY IS NICE!
Spiritual support
For some spiritual support feels pointless, and I agree, if the practical and emotional support needs aren’t met at all. I mean we all know that thoughts and prayers don’t do much unless there’s action being inspired from these thoughts and prayers.
I think spiritual support though is a lovely add on and is actually quite nice to receive in tandem. Everyone’s spirituality is different, so I won’t pretend to be able to give much insight into such a personal thing or know for sure what will feel supportive in detail, but I do have one big idea.
1. Participate in the rituals your spoonie friend participates in spiritually
Perhaps one of the most devastating losses for chronically ill people is feeling a spiritual disconnect either because there is not enough energy to participate in spiritual rituals that once meant the whole world to them, or some become not accessible due to health limitations or concerns (for example going to a place of worship may be unsafe for some if they are immune compromised).
I have always really enjoyed people wanting to participate with me on my rituals. I personally have been observing the wheel of the year, according to the pagan calendar, living with the seasons for many years now and we did that too growing up. I follow moon cycles and the astrological year and transits as well. For me writing is also a spiritual practice, which is why I used to offer what I called “writing church” every Sunday in 2020 during peak pandemic times, as a place of worship and connection to self and to God to clients, friends, etc.
In 2023, I had to stop facilitating wheel of the year events (like my beloved Samhain one *cries*). I’ve really missed this. My mom and I are still doing many low-key pagan rituals together and it provides such great support and orientation.
Here are some ideas to join in or support your spoonie spiritually (this is definitely not an exhaustive list either, I am by no means a religious practice expert, this may feel reductionist, so don’t be afraid to ask your spoonie friend what would be fun for them in terms of support here, brainstorm woo!):
If your spoonie person loves tarot and divination tools, ask them if they want to do readings together, offer one even. Sometimes putting spiritual context to the situation allows us to know what to focus on, and where we can gain strength from.
If they are Muslim, it might be a huge priority to be present during their daily prayers, and you could assist this by taking things off their plates to make this possible. If they are too sick to participate in fasting for Ramadan this year, perhaps ask them how you could support them and participate in developing and fortifying the practices that Ramadan is for - maybe a well thought out gratitude list, empathy for causes they really care about, quality time to support each other.
If they are Buddhist, accept invitations to go to Sangha weekly, initiate to meditate together, practice dana for causes they care about.
If they are Jewish, maybe cooking Sabbath dinner for them and gathering with loved ones in a covid safe way where all the phones are placed in a basket would be real nice.
If they are Christian perhaps creating a virtual bible study group so they can participate. It might be supportive to talk on themes that are relevant to them as well, so they end up feeling less alone. If they are Catholic, maybe lighting a holy candle on behalf of them in church or at your home, praying on them and their wellness. Perhaps you organize an anti-ableist Christmas dinner or Easter brunch where everyone has taken covid/flu precautions and tested so the spoonie pal can join!
Of course there’s a chance your spoonie will not want to engage in spiritual support, but asking, and learning more about what matters to them and what helps them or what they need, is never a waste.