What people with chronic illness need part 1
A comprehensive support guide for family, lovers and friends of those who are sick:: ORIGINALLY PUBLISHED on FEBRUARY 1st 2024
Dear soft heart,
As you may know if you read the letter The year of the tower that came out in mid January, my chronic illnesses came out of remission sometime in 2022 alongside a bad autistic burn out (that I can’t wait to report more on) by the end of that year. In consequent, 2023 was a year that became a very ill one over here. I lost a lot of physical and financial independence because of this. I also gained a lot of skillset around expressing my needs, my wants and desires, and most especially, my limits - both to myself and others because of how sick I became, and how much I wanted to feel better.
I’ve yet to detail all of these symptoms and what my life has looked like for the past year -the trauma, the joys, the lows and the highs - but some of these things pop up throughout this piece about what people with chronic illness need.
As a disclaimer, I am not claiming to know what every person with chronic illness needs or wants, this list is not exhaustive, and this is certainly not meant to be a one size fits all sort of self-help piece. Rather, this is meant to be a guide for us to refer to and to share if it’s helpful when someone says “let me know if I can do anything” and our mind goes blank. If anything, my biggest piece of advice around what people with chronic illness need as someone who’s had chronic illness for 16 years now, and who also now lived through a pretty long stretch of remission and then plunged back into it sometime about 2 years ago, is to ask more questions and just get to know the reality of the chronically ill people in your life so that you know what they are up against, and thus how to support them better.
This piece is written sort of more to the family, lovers and friends of someone who is suffering with chronic illness, because one, it is hard for us when we are sick to identify what we need, let alone be brave enough to ask and risk rejection so I wanted to make a shortcut for us, and two, I’ve observed and received the feedback of a lot of people who are around chronic illness who want to help, but simply do not know how. And this leads to a lot of unnecessary helplessness. You are not helpless if you want to help someone you love with chronic illness. I’ll show you some practical steps below and emotional and spiritual ways in my next letter. And also, if you are someone who needs help, I deeply understand the vulnerability and fragility of your position. I hope this list makes you feel a bit more seen, and I hope if you feel comfortable that you send it to your loved ones who have expressed care in the past for you, even if the number is very few.
So yes, I’ve split up this list into two parts, part one (what you’re reading now) - practical support - which will include support that we as chronically ill people often need both physically and financially. And part two will include emotional and spiritual support.
Now, I will also add before we get into it, that these supports are useful at different times in the life of a chronically ill person. For sure it’s written in mind to represent the person who is out of remission or suffering acutely in a chronic way as we speak. However, for example, when I was in remission, not suffering acutely over a long period of time, and pretty functional, I still occasionally had flares and this support I highlight below would have been helpful as well in those times. Again, and I’ll be writing this a lot below, get to know the reality of the spoonie you love.
I do want to also mention that a precursor to all of this practical support is and has to be safe housing. Many chronically ill people live in unsafe homes that contribute massively to their chronic illnesses - whether that is in an abusive situation or a house that is inadequate in terms of healthy environment, for example, a house with mold. Many chronically ill people may also live with family members, partners, or roommates who don’t practice anti-ableist ways of being, so that also sucks and isn’t okay. In some situations, people may just not have the education, and may not be doing this on purpose or with any awareness. In these cases, a great way to help your chronically ill friend is to share this education below to remove a layer of emotional labor for them. If it’s a situation where this is done maliciously, obviously we are under the umbrella of some kind of abuse there. If you have the means, and you know a loved one is in an unsafe housing situation for any reason, help there first always - to secure safe housing, access safe housing, all of that.
Alright, here are ways to support a chronically ill pal practically…
Practical (physical and financial) support
1. Food support
Gathering and providing food for yourself is extremely difficult when you are sick.
First make sure that the person has enough funds monthly either through income, various support money they receive whether that’s family funds, disability, etc for groceries. If they do not, that’s clearly the first step to help with.
Now the different parts and how to help once it’s clear there is an adequate food budget:
1 a) Grocery shopping
If services like instacart are present in their city, awesome, cover those instacart fees, the tips for the shoppers, etc.
Help them plan what they need to order for their shop: a good mix of protein, carbs and veg + fruit.
Find out if mobility is an issue and lugging groceries in if they are dropped off at the door, and putting them away is not accessible. If it is not accessible, and the person doesn’t have an in home carer figure (a parent, spouse, roommate who’s willing to help) who can do this physical labor task, either you can do it for them weekly, or biweekly during grocery haul days, or you can hire task rabbit sort of people or even a regular task management carer for them for things like this if you can’t. These prices will range, and perhaps it is easier for them to put away small grocery loads vs large ones, and they only need help during the one bulk order of the month. I cannot stress this enough - have these conversations with your spoonies: find out what the truth is for them here. Personally, I’ve needed help with all these steps for the last while. Most abled people don’t even consider this an issue because it’s not one for them.
If services like instacart are not available or rarely reliable:
In some places, especially fairly rural places, instacart may not be available, so at this point, help your spoonie figure out what is possible to make grocery shopping easier.
Some local grocery stores have agreed since the pandemic to do the grocery shopping in store for immune compromised folks and carry it out to their cars to reduce and eliminate risk of exposure. This is a great option, however, here there are still tasks that cannot be completed by the spoonie alone - driving to and from the store, carrying boxes from the car to the house, putting groceries away. Help needs to be resourced where pain and exertion issues prevent the person with chronic illness to do this whole plan through.
1 b) Making food
A lot of chronic illness sufferers have allergies and thus restricted diets which can make food prep complicated at best and exhausting at worse. A good thing to remember is just to make meals simple: a veggie, a carb, a protein.
Making food is the number one stressful thing for me when I am not feeling well. Not having food prepped or made when I am not sleeping more than a few hours a day with crippling pain makes me so scared and so stressed out. Find out what your spoonie’s situation is around making food. In my situation, my mom works full time, and she needs to, so this means, she has limited time to make food for me additional to all her care taker duties.
So something I majorly need help with is meal prepping.
I can not tell you enough how helpful it is to have someone come over for a weekend (2 days) and have them cook large batches of a handful of recipes that have ingredients I can eat that can be frozen and then enjoyed for a few weeks (even up to a month). Here are some ideas:
Vegan shepard’s pie (4-5 portions)
Freezer burritos (put in 8 burritos wraps)
Beef stew (4 portions) - do a bean and lentil stew if vegan or veggie.
Just these recipes can easily make 25 portions if you’re making a decent batch - that’s dinner for almost an entire month for the person. Up it and make two lasagnas and you just gave them dinner for another entire weekday week.
A good plan:
I think what is most helpful in this case is to gather 3 really solid people in a chronically ill person’s life (yours if you are the spoonie reading this) who want to help across all their (/your) family, friends or lovers. If 3 people can agree they will each go help the spoonie (you) once per season (one time every 3 months each - 4 times a year for one weekend), the meal prep becomes a non issue.
Individually each person who wants to help gives 8 days of their life per year (4 weekends per year), and their physical labor on those days to make it happen. The goal is that the spoonie never has to go hungry for dinner ever again because they are in pain and can’t move or make themselves food for an entire year with a sort of plan like this. This is called community care and we desperately need it. Make it easy for us, initiate this, offer this, ask us what we think of it all on your own. We will be so thankful.
An alternative:
You can order meals that are prepped that have ingredients that your spoonie pal can eat from many delivery services, especially if they are in major cities. Even abled people are having trouble keeping up with both work, and life obligations such as making food for themselves/ their families, so I have found there’s a ton of options nowadays because most people don’t have time or energy to make their food anymore. Obviously, our whole world may need an overhaul but that is a piece for another time. Point is for now, a lot of companies are making prepped meal deliveries.
If you are someone who wants to help the chronically ill person with these costs, cover a month, or 3 months per year (a whole season!), that is such a helpful and loving thing to do. Again, it would be cool to have multiple people cover these costs to help.
Helping with food once is not enough though. There has to be a sustainable plan in place. ‘Cause you know, every single day, we wake up and need more food.
A wonderful example of meal prep. :)
2. Cleaning support
I love to clean and especially deep clean, and there have been times in my physical and financial independence in remission that I would hire cleaning support once a week, or twice a month to prevent over exertion, reduce flares, and pace. This was even more true, and needed, when I lived alone.
In 2023 though, I lost the skill to clean and deep clean because my physical pain was too pronounced to do so and the following post exertion malaise was dangerous for my vitals.
Cleaning support ranges in price. I’ll just go with what it currently costs me, $30 an hour. A full clean in my space (dusting, cleaning counter tops, disinfecting, vacuuming, mopping) takes about 3-4 hours, so for $120-240 a month, one to two cleans, I can have this task off my plate and not live in dirty conditions.
Most sick people won’t ask for this, but it would be the best thing ever to receive this service paid for from family members, friends or lovers as a gift or as something to be supported by. Again, you could split costs among people who really care. Monthly, the cost for two cleanings split amongst 3 people who really want to help is $80. You could even settle for once a month to reduce costs. Imagine what difference it would be make for the sick person in your life to not have to hurt themselves cleaning, or have no choice but to live in filth because they can’t access this labor with their current pain levels.
This is also something you can do yourself if you live locally to the person or like to clean. Trust me, it’s life changing and most of us might not ask for this help even though we desperately need this help.
3. Various other home/household supports
Now this is going to depend on the person’s home situation and also the climate, but for example, me who lives in a snowy winter, I cannot shovel snow physically - especially with the way POTS affects me lately - I have extremely low blood pressure.
Things like getting a snow removal company to come, or a fit young person in the neighborhood who’s removing snow as an after school job to come every time there is a snowstorm is key.
These supports can also help with grass cutting in the summer if that’s necessary.
Laundry support is a huge one. Either hiring help for the spoonie and covering those costs, or coming over and helping with the physical and logistical labor yourself is life-changing. Bringing laundry to and back from a self-service laundry place, or dry cleaner, things such as.
Some folks (like me) love their flowers or their plants and watering these can sometimes be inaccessible. Help with stuff like that is great. It’s not necessary to have plants, but sometimes, they are a big part of a person’s joy and that is valuable, especially when joy is so hard to have when you’re sick.
What broke my heart in 2023 is that I couldn’t have an elaborate garden with veggies and all sorts of goodies for the first time in a few years since it became a special interest of mine because I simply did not have the energy to maintain it which would mean all the plants would die and nothing would be harvested well enough. I did grow a few zinnias though, because they are fairly low maintenance.
My beloved zinnias of the summer.
4. Take the travel burden off them
Travelling as a chronically ill person or as a disabled person is tough just because of environment changes, but it’s also perhaps not possible to travel due to symptoms.
In 2022, I started developing major vestibular issues when driving in the car - either if I was driving or even if I was a passenger in the vehicle. The first time it happened, I was so incredibly scared. It was one of the scariest nights of my entire life actually. I had never had these sensations and these symptoms. It wasn’t happening every time I’d be in the car yet, but as time went on progressively, it happened more frequently. The movement would trigger vertigo, dizziness, debilitating migraines, feelings of being seasick on land, or like I had just been on a trampoline for hours and I was now back on solid ground, vomiting.
As 2023 went on, it was happening more frequently, now nearly each time I’d be in the car period. I stopped being able to travel long distances as the more time spent in the car, the more the symptoms would become intense and take longer to pass (which honestly kept being scary). Some days, short distances also trigger it.
I can’t tell you the amount of events I have missed on in people’s lives that I wanted to be at in the past year because of the fact that I couldn’t travel at all due to the vestibular issues triggered by it.
So go to your spoonie friends and lovers if you are not disabled or chronically ill like they are and they want to see you or can tolerate socializing a bit, don’t expect them to come to you as some sort of equality bid. It’s not equal. They don’t have the same ability as you. If they can’t make a physical event that is close or far from them due to travel barriers, and they are open to it, facetime them in. It will probably mean the world to them to be included. They will feel majorly considered.
Source: equity tool
5. Practice anti-ableist ways of being
Okay, so let’s say you are into equity and going to spend some time with your spoonie friend who means so much to you, and you to them.
Here’s what you can do super simply to not pass on viruses and flus to them that would take them ages to get over, and potentially cause long term complications and even more loss of skill:
For 5-7 days prior to (or whatever the current median incubation time for the main covid variant going around in your area, and what the main flus of the season are):
Mask (with a N95) in all essential spaces that you go to - for example, if you live in an apartment building - mask in the elevator or in the mail room or any common areas. Mask in the grocery store (or get groceries delivered), at the gas station, medical appointments, at work, even better if you can work from home for these days, etc.
And practice physical distancing in non essential settings. This means: do not hang out with others unmasked or go to any events or indoor space like gyms, restaurants, pubs, during this time. If you are hanging out with people, do it outside, and keep a distance. Easy peasy.
Test before you come. Negative? Great. Voila!
It really surprises me each time I hear people who aren’t ill make this sound like absolute torture. It’s really not.
If you have kids, you’re not going to be able to avoid exposure the way people without kids are able to since there is most likely the highly unpredictable school exposure. So at that point, still take precautions and mask in essential settings and avoid unnecessary exposure risks in non essential settings, and simply be aware of symptoms in you or the people you live with prior to your visit. Don’t come if you are sick or if anyone in your household has symptoms. Test before you come. And I personally think the best bet is to plan your visits during lower transmission times to reduce risks (like the summer for example).
As Andrea Gibson said in this piece “Love continues to save me”, they caught a cold from a friend that had one day sniffle, which in their body turned into an 11-week coughing into oblivion situation.
I wish more than anything that non immune compromised people would understand this - things like the common cold, covid, the flu will affect us way way way worse than it will affect you. In fact it’s not even comparable. This is why it’s worth it to protect us. We are not over reacting or trying to make things way more complicated than they need to be. We are also not paranoid about this. It’s just reality for us. But I know it sounds extreme if you’ve never lived it. I beg you to believe us though.
Andrea says this about this exact sentiment:
I’ve been immunocompromised for most of my adult life, and because chemo has further impacted my immunity, I have been pretty quarantined since the beginning of the pandemic. I haven’t eaten inside of a restaurant in two and a half years. I wear an N95 in public places. I covid-test anyone who steps foot in my house. I imagine that sounds quite extreme to some, but covid, cancer, and chemo are a threesome I’m not masochistic enough to long for.
6. Appointment support
We have to go to a lot of appointments. Most of us cannot drive to said appointments alone, so transportation is a good first step to help with.
Ideally if you can help a spoonie find practitioners that will come to their house - awesome. Make sure all the practitioners in this case understand the anti-ableist ways of being to protect an immune compromised person, also known as, please mask with an N95, and do not come if they or anyone they are in physical contact with are having symptoms to reduce transmission risks.
If your spoonie pal has to go into hard appointments, help them make sure they have their sensory support aids (for me for example, it’s my headphones, some play doh to fiddle with, some sunglasses, a safe person with me that I can co-regulate with).
I personally really appreciate and need physical affection and/or emotional support to feel regulated in hard situations. It makes me feel safe not to feel alone. Again, ask your spoonie what their preference is. But it may be really helpful to be going with them physically to hold their hands, give physical affection (a hand on the back, a hand hold, a hug can change the game) ask questions for them that you prepped ahead of time together, relay their experience if they ask you to do so, to the practitioner, if that is helpful for them.
Not being alone when your body feels incredibly vulnerable and you feel super fragile should be essential if you want that support.
If you can’t be with the spoonie in person, providing ample emotional support before, during and after appointments can be really great. See emotional support section in the next piece of this series for more tips.
7. (If applicable) Alleviate the main care taker of their duties
This one is way more intimate, and thus also way more life changing if possible and if applicable.
If your spoonie pal has a main care giver, figure out what the main care taker’s tasks are and take them over for a week. So in my mom’s case, we’d be looking at practical things like:
grocery shopping and all that entails
cooking and meal prepping
laundry/most other various home upkeep stuff
appointment help and assistance
overnight care when necessary
help when mobility range is limited - i.e in and out of the bath, up and down stairs, etc.
*She also does a lot of emotional and spiritual support too, but sticking to the practical for this example.
Some of the duties are harder here, yes. Care givers do the most unpaid, and honestly, the most unacknowledged labor. It needs to be said that when you’re seriously chronically ill, it’s not just like a cold or a flu that gets better in a few days, it’s not just a few bad days/ nights, the care taker duties don’t really go away and there’s not always an end point.
Yeah, if you come to help your spoonie pal for these more extensive caregiver tasks, you may be tired alongside us (the spoonie) after a week, but it can give a break to the person on whom we rely on most, who also needs their time to recoup and recharge on their own without so many duties once in a while to stay healthy and solid within all the responsibilities of caring for someone else long-term.
If you can, and you have this closeness with the spoonie, do a few weeks per year. Take turns among other loved ones if there’s more than one of you. This is obviously ideal, and won’t be possible in all cases, but hey, we can ask for the most tender things we need on this list.
Again, I cannot stress this enough, a lot of sick people are mortified about their practical support needs (not all of us, but yes, a lot of us), we can feel like burdens and we can desperately need and want help, but it’s common for us in a very ableist society to feel too ashamed, guilty and embarrassed to need what we need, and ask for it. Many of us will suffer through inconceivable amounts of pain because we have no help available to us, or are scared to be resented if we ask for it and actually receive it. Internalized ableism gets reinforced, even as we try to dismantle it, each time someone reflects ableist ways of being back to us.
So what can you do for your spoonie pal?
Make it easier on them, initiate these conversations. Ask them questions about what goes on behind closed doors in their chronically ill world. Offer to help before they ask. If they are brave and they ask, make it known it is your pleasure to assist. And finally, take good care of yourself, so that we can take good care of each other.