Monday, October 29, 2018

How to say and do the right thing for someone struggling with chronic illness

If any of you have recently watched the first Deadpool movie, I'll refer you now to a the scene above in which Wade Wilson goes on a mini rant about cancer to his girlfriend Vanessa.

At the end of the scene he emphatically states: "And under no circumstances will I invite YOU to this (shit) show!"

That got me thinking about the role of isolation in Chronic illness.

It's generally well known that being socially isolated makes people more likely to develop mental and physical illness... so it's obviously a good idea for someone already prone to these things not to be left on their own for too long right?

So why do we have such a problem showing up for our Chronically ill friends?

I'm assuming it's not because we don't care. On the contrary I'm fairly certain the reason we don't show up is because we don't know HOW. But if we keep a level heald about it I figure it's pretty simple.

We all get taught to think about illness in a certain way. From childhood illness is described as follows:

1. Something that can be managed by consuming healing substances or getting procedures done and resting.
2. A state in which you should more often than not isolate yourself from others and withdraw for a time to heal.
3. It is thought of as a state of being less than a normal human. Something is WRONG with you. You're not fully at capacity.
4. You are only given a fixed period in which to convalesce. When you take too long to heal, others may judge you as being poor at caring for yourself or you are lying about how ill you are.

So lets take those four things apart a little more.

1. Something that can be managed by consuming healing substances or getting procedures done and resting

This is I think one of the main reasons why chronic illness perplexes healthy people. How do you interface with someone who cannot take something, or receive a procedure, convalesce a while and then heal? What is this voodoo you speak of in which you just STAY SICK?

This is because unlike normal illnesses, rule one of healing from chronic illness is that even when you take all the medicine and rest all the time and do all the are still going to have days when you are as sick as most people's worst day of the flu and this won't meaningfully alter based on anything YOU DO.

There is no control you have over whether or not you will continue to be chronically ill. There is only control over how you deal with being chronically ill.

This can be hard for people to accept. It's terrifying for healthy people to imagine such a thing. A sickness that doesn't heal? A damp in your performance that doesn't go away? That experience of rubbing up againsts such human frailty can make people feel a bit awkward and stressed. It might remind them of losing a grandparent and watching their decline for example, and bring them to a confrontation of their OWN mortality.

This can make being around a chronically ill person uncomfortable and even emotional for a well person. But it's really important that friends dig deep within themselves and GET OVER IT. You see, we have those same fears....but for us there isn't a way to avoid confronting them. It literally lives with us in our body. If we can live with it day by day, I'm pretty confident you will discover you have the strength if you challenge yourself.

By all means, if the feeling overwhelms you do something about it. We do. Speak to your own doctor or therapist about your fears. Talk to a parent or a priest. This is what we do as chronically ill people to find the strength so there's no reason you shouldn't do the same.

But do that work, if you love us, of getting over being afraid of being us.

2. A state in which you should more often than not isolate yourself from others and withdraw for a time to heal

Staying home and healing up and not making a nuisance of my sick self in public is totally a valid thing to do when I have a cold that passes in three days. But when you have a chronic illness there comes a point when like it or not, my sick self is going to need to be about my business. There's simply no way around that.

Being chronically ill means doing things while you are technically so sick you should be in bed, or in hospital. This is another one that hits healthy people in a hard way. Because they have never had to get up and keep going through terrible illness, many don't realise it's actually a thing people do who are chronically ill. They somehow naively believe that being chronically ill is like having your period. You're ill...for a few days a month every month. They often cannot fathom waking up deeply tired, crushingly in pain and emotionally wrecked....and still getting out of the house and doing a days work.

I would challenge anyone who is healthy but wants to understand the experience a little better. For a full month, you are not allowed to brush your teeth, comb your hair, or wash unless you have done an extra two hours in the gym.

This will serve two purposes. You'll be tired as hell. That's something chronically ill people understand well. You will feel stiff and sore all the time and everywhere. Check. You'll want to shower and brush your teeth but find yourself skipping it because the thought of those two hours in the gym will simply be too much some days. You'll discover that wet wipes, dry shampoo, hand sanitiser, and deodorant have off-label uses you never dreamed of. And you'll be RIPPED if you manage to keep it up.

IF you keep it up.

Because pulling an extra two hours in the gym each day is a lot like being chronically ill. The amount of extra energy, time and physical discomfort involved can be somewhat mimicked by doing a really hard workout.

If this thought experiment is sufficient to give you ample empathy for how not cool that might be, skip the gym if you want....but remember that I don't ever get to skip being chronically ill. If I don't "go to the gym" of dealing with my chronic illness, chances are I either land up in hospital, or lose mobility or the ability to speak or think straight,  or in some cases some people with chronic illnesses can even die if they skip a day of showing up to the work of their illness.

And there's generally not a point where caring for your chronic illness means you get FITTER. Unlike working out, you don't get buff from being chronically ill.

3. It is thought of as a state of being less than a normal human. You're not fully at capacity.  Something is WRONG with you.

When you have a chronic illness, you're never going to be at full capacity ever again. You're now forever going to be someone that is checking their daily capacity, and based on a few factors the most of which you do not control, you will wake with some fraction of the percentage of energy and ability that prior to chronic illness you'd have considered your best day. Having your best day is like having your birthday or winning the lottery.

So there is something here we need to address. People who are not at the same capacity for work as other people are not broken or lesser than or subhuman or WRONG. Your worth as a being isn't determined by your CAPACITY FOR WORK.

This is something that's become really entrenched in our capitalist industrialist society, and it's a dangerous belief. Being a good friend to a person with a chronic illness means leaving this limiting belief behind. Our lives have inherent worth, meaning and purpose even when we cannot work.

Not being able to work is not a form of weakness, or poor judgment, or a flawed character. Being chronically too ill to work a normal job or any job is just a reality of life with chronic illness.

There are many ways to be of value to your community even then. I run a 5000 person strong community support group online, and coordinate relief efforts for members of my community in dire straights. I support parents in rearing their children with chronic illnesses like Ehlers Danlos Syndrome and provide them with information and guidance towards resources and support for their families. I also write these blogs and articles and create lessons for people who use alternative means of communication to learn about topics like science or biology.

These are all things I do sitting in a chair in my room, or in bed. I do not work in the normal sense of the word. But because I do these helpful things when I can do them and  I have people who support my patreon page, or my paypal account or send me funds to my backabuddy page. These things all allow me to live despite no having a normal job. This is just as valid a way of living as having a 9 to 5er.

I'm not able to work...but my life has worth. I'm at full capacity for being ME.

4. You are only given a fixed period in which to convalesce. When you take too long to heal, others may judge you as being poor at caring for yourself or you are lying about how ill you are.

People keep expecting me to get better. This is...perplexing. I mean, many of them have known me for decades. Still...they keep expecting me to have another answer when they ask me "How are you?"

Don't ask people with chronic illness how they are. Ask them how they are TODAY. Or better yet, ask them what they are doing right now that's interesting and fun for them. But don't expect to get a different answer than the one you've been getting for the last week, or month, or year, or decade.

Chronic illnesses don't heal. There's no period of healing that will fix this. There's often no treatment or cure. Knowing how I'm really doing won't really help you be my friend right now. I know you don't really get it. You aren't' someone with a chronic illness. You need to accept that's a part of MY experience you cannot empathise with. GET OVER IT.

I have.

What does help me is you accepting that me not getting better and me still being a mess 6 months or 6 years or 60 years later is OK. Not getting better when you're chronically ill is perfectly valid. I don't need to perform wellness for people who accept my illness - and that takes enormous pressure off of me.

BE someone who accepts my illness as much as I do.

What can you do to help though? Well, there is actually a lot! And it's at all different levels of intimacy, commitment, effort, and cost to you so you can always find something nice and helpful to do to support a chronically ill friend no matter the circumstance. Sometimes it just takes being a little more thoughtful, asking the right questions, and thinking outside of the box:

1. Ask me how I'm doing with my daily regime, or whether there have been any new developments in my treatments or management. Understanding what I do to be well will help you find ways to pitch in, or help me do those things more easily. Chronically ill people often like to relate these sorts of things to each other, so they might be willing to tell you too.

2. There are great ways to engage and share in my journey of wellbeing. Talking about your own health is fine, and I do care to listen about what you're doing in your life too...Just remember not to pitch in with advice from your auntie who sells Herbalife or this cool article you read on Facebook. You aren't here to give me advice, you're here to get to know the things about my health that matter to me, and maybe help me do those things. Keep the backyard doctoring in the box. if I need your advice, I'll ask.

2. Share in that path by offering to support me with something. If I'm a forgetful person going through a rough patch, offer to check in on me for a while to help me remember to take my meds each day, or make a point of helping me catch up on difficult chores once every few months. This can just be a quick text message or coming round to take out my trash for all of five minutes once a week. Little things for you are sometimes big things to us.

3. Drop in once every two weeks to come to visit a housebound friend and bring them a treat. When you're finding it hard to go out or get fun things in your life, being visited can be amazing. Being visited regularly gives structure and a sense of security in a friendship that can be very comforting, especially for a chronically ill person who may feel depressed and isolated.

4. If you're flush, set up a weekly takeaway delivery to a sick friend's home. Not having to cook one night a week can be a real joy. Better yet, bring your sexy self over and come to watch a movie with us on Pizza night!

5. Check in from time to time with us whether we need any physical or mental support of a particular kind. Having another fruit basket or slab of chocolate is charming, but having a friend who will ask me what to get me or how to help me is GOLDEN.

6. Call me just to tell me about your shit. I mean I'm REALLY tired of talking about my shit all the time. I've got to deal with this thing 24/7 and I probably see my doctor more often than I see you. You don't have to talk about this illness of mine ALL THE TIME. I actually want to know what's up for YOU.

7. Make group outings accessible for me. If you're all doing a ladies night, choose a bar that has an access ramp. Or try going at a time of day or day in the month that I'm actually feeling up to going along - check in with me when that is and help me coordinate when this goes down so I can bring my best self to the party that day. Give me a lift if it's hard for me to drive, or be ready to jet me out of there fast if I pass out or feel ill and let me know you're prepared for those things and I'm totally still welcome. Because I'd just stay home and miss out before I put that on you without your say so. Give me permission to be a drag.

8. Help me prepare to go to places I need to go. Sometimes I don't need someone to do the thing, I just need someone to sit with me while I do it. Many people with cognitive issues like brain fog or executive function problems just need help from someone in the room offering them pointers on what they were doing and why they were doing it. It's a low maintenance way of giving invaluable support. If I've got a big appointment that's got me rattled, having someone there to ensure I am dressed and ready on time and geared to go takes enormous stress off me, even if they don't actually dress me, or do anything but talk me through the prep.

9. Carry emergency supplies for my care when we hang out. I know you're my true friend when you keep earplugs in your cubby that are there JUST for me, or you have a stash of tranqs in the glovebox that you keep around for in case I have a panic attack in public or you keep sachet of electrolytes in your bag in case my POTS hits, or you know where I keep my epipen or insulin shot. It's the little things...

10. Remind me often that canceling plans or rescheduling is ok. I live in fear that letting you down will mean you dump me as a friend. It's hard when I am often not able to share in adventures with you, or visit because I'm ill. Reminding me that you'll love me even when my being ill robs us of time together will help me feel safer making plans with you to go out and do fun things.

If I think of more ideas I'll add them on later, but that's my best for now.


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