What doesn’t kill you makes you weaker: advice on living with chronic illnesses such as Fibromyalgia, Chronic Fatigue, and Long Covid (trigger warning: depression)

April 10, 2023 at 11:19 am (Uncategorized)

Prologue: It can and probably will happen to you.

The world is getting more and more disabled people, because a significant proportion of those who get Covid develop Long Covid. Without getting technical, imagine tiredness, weakness, brain fog, and pain at the same level as the flu but forever. If you are chronically ill, you are disabled. No amount of self-control, diet, or medication is going to get you well again.

Around 10% of the population is disabled. It can happen to you, and it is probably already happening to someone you know. If you don’t know anyone with a disability or chronic illness, you actually do. They either keep their suffering hidden or (as often happens) they just don’t fit into your healthy-ish lifestyle, and you didn’t notice when they disappeared.

Everyone who lives long enough will become disabled. It is not a “someone else” problem. Kindly remember that fact when you vote, when you design your home or work space, and when you make long-term plans.

It happened to me.

Pregnancy and birth is a serious physical ordeal that still kills many women today. My body had several chronic issues after my first pregnancy, but my husband and I decided to take a chance and have a second. From that point onward, I was disabled (although it took five years to get a diagnosis of fibromyalgia, which is how long it takes for most people). I can remember begging my partner not to leave the house for more than three hours at a time as I wasn’t well enough to care for the kids for that long.

Yes, I’m aware of the dramatic irony of pregnancy taking away my ability to be a ‘good’ mother. If I could punch dramatic irony in the face, I definitely would.

I also have migraines (also from pregnancy—without medication I would have them every day), and after a few years of fibromyalgia I became morbidly obese and developed diabetes and a couple of other conditions (once you have one chronic condition, you tend to get more as your body is permanently out of whack). I’m also intolerant of FODMAPS and Salicylates (which basically covers 99% of all fruits and veggies—thanks, body!) Shockingly, I also have depression and anxiety. Most disabled people have at least one major mental illness to keep their physical illnesses company.

Worth it.

Part 1: What to do to prepare for the demise of your health (or your partner’s health)

a) If possible, get health insurance. My health insurance costs over $100/month and hasn’t paid me a cent even though I’ve been disabled for eight years. It lists 46 different health conditions that get a payout. Fibromyalgia is specifically excluded.

If you can, get health insurance that covers your degree of ill health rather than specific conditions. And income insurance.

Actually, income insurance is better suited to helping you cope with Long Covid or other disabling conditions. Get that.

b) Talk to your partner realistically about the fact that one or both of you may end up becoming a carer and/or financial support for the other. Note that although Australia has a Disability Support Pension (possible but difficult to get for chronic conditions), it is assumed that your marriage partner (including de facto marriage partners) will share EVERYTHING that they have with you. So if they earn above about $80,000/year or the two of you have more than $3600 in the bank you will not be able to get any government help. Can you support a family of four on that income? (Take-home pay of about $60,000/year, and rent for a 3-bedroom home is at least $30,000/year—which also means you probably won’t be approved for a 3-bedroom rental if you’re not already living there. And a lot of people, such as single parents, have it much worse.) Ask each other, “What if I wasn’t able to work?” “What if you weren’t able to work?” Can either of you become the breadwinner if you have to? Make sure both of you know how to do all the household chores (including cooking a few standard meals) in case one of you can’t do them any more. Talk about the fact that marriages often break down if one person becomes chronically ill, especially if the ill person is a woman. Talk about the fact that chronic illness goes hand in hand with depression and with massive weight gain. Try to figure out what matters most to each person eg one person may feel loved when given gifts like flowers regularly; one may rely on physical intimacy to feel loved; one may need to be told “I love you” every day.

c) Finances. Try to have savings if you can. Basically, if you get sick you’re financially screwed. As any millennial can tell you, our society now expects everyone to be in a committed long-term relationship that contains two able-bodied adults who both work full-time. Sorry about that.

Pick one thing on your bucket list (that doesn’t involve travel, crowds, or hospitals) and do it now, so that if you get sick you can say, “Well, I probably can’t ever go to Paris but I DID learn how to play the ukelele.”

And yes, I know I just told you to have great savings AND to buy and spend a bunch. Sorry.

d) Got kids? If they’re over four years old, there are SOME jobs they can be trained to do. Even if it’s not appropriate to have them doing regular chores, try to teach them the skills so that they are physically capable of doing more chores if they need to (teaching kids chores takes time & health). Focus on the essentials: packing and unpacking their bag before and after school; making their own lunch; filling their drink bottle; getting dressed and undressed; taking care of their own personal hygiene. Sorting washing; putting away washing; hanging out wet washing; putting a load of washing on; remembering to get the wet washing when it’s done; washing dishes; stacking and setting off the dishwasher; unpacking the dishwasher; vacuuming; cleaning bathrooms; mopping; cooking; preparing their own snacks and getting their own drinks when they’re hungry and thirsty; entertaining themselves; walking to and from school; walking to and from the local shops; finding an item at the shops (eg milk) and buying it.

Make some memories with the kids doing stuff that you couldn’t do if you were unwell eg holidays, playing sports, hiking, leaving the house kinda thing.

e) Have at least one friend that you are very honest with eg “I’m too tired to wear a bra but I’d love if you would come over and make me a cup of tea (and a drink for yourself) and re-watch Lord of the Rings with me.” Someone other than your partner.

f) Contribute to your friends and your communities while you can eg washing up after church morning tea; helping friends move house; cooking for a family with a new baby.

g) If possible, make your house and workplace more disability friendly with ramps, reverse cycle air conditioning (many sick people are extremely sensitive to heat and/or cold), comfortable chairs for every situation (many people can’t stand for more than thirty seconds without pain), a bath (for cheap pain relief), and possibly lifts (most non-paralysed-but-still-disabled people are okay with a few stairs but a full flight can be a major obstacle). If you can, have a wheelchair accessible toilet and plenty of room in hallways etc. Get solar panels.

h) Make sure your finances and paperwork are in order, including a will. But the main reason for this is that ‘brain fog’ is a major symptom for most chronic conditions. So if you are sick, you are probably not able to run the paperwork side of the household. I once paid our car registration incorrectly and we nearly got a massive fine before it got sorted out. I regularly forget to pay bills. I nearly ran out of insulin over Christmas even though I had thought of that possibility and prepared for it. I regularly take a wrong turn on the way to a familiar location.

Maybe learn how to do a shared household calendar and shopping list. Have a perpetual calendar that shows all your bills for the year.

Unfortunately Chris has ADHD so paperwork-wise the buck stops with me. I have a whole complicated system that usually works including physically leaving paper bills in a prominent location until they’re paid, marking in my diary every month when our mortgage is due, and using a Webster pack for medication (SO helpful!)

Write down your passwords, and make sure the partner knows where they all are. I know writing down passwords is meant to be bad but if you have them in a spot far away from your computers etc but where you both know where they are, that will save a lot of grief.

Time for a kitten break, I think.

Part 2: How to live with chronic illness in yourself or your partner

This is Chris, my husband. We married in 2009 and our kids are in Year 3 and Year 6 this year. He is an extremely calm and naturally contented person, which is very helpful because he doesn’t dwell on the fact that his quality of life dropped sharply when I got sick.

To be fair, my quality of life dropped a lot more than his.

a) Fat. One of the best things Chris has done is that he’s never once commented on my massive weight gain. As of this entry, I weigh literally double what I weighed on our wedding day. Some of it is from emotional eating (to keep myself from burning down the world and/or harming myself). Some of it is from eating to stay awake or to distract myself from pain. Some of it is from not being able to exercise much. But the bulk of it (see what I did there?) is side effects of either my medical conditions or my medication. I am incredibly sad at the moment as my weight was stable for several years (even through lockdown) and then suddenly jumped by nearly ten freaking kilos. Guess what caused that? Insulin. Cool, the medication now keeping me alive just completely screwed me over. And giving myself injections every morning before breakfast was already so fun.

Some chronically ill people gain only a little bit of weight or even lose weight. Weight loss from illness is difficult as society tends to view it as a plus and doesn’t see it as a dangerous health issue. Weight gain is hated with a visceral passion by modern society, and it is very difficult to live with. As a bonus, a fat disabled person is more likely to be seen as purely lazy—by strangers, by friends and family, and by doctors. The hatred towards overweight people is incredibly painful and can be deadly. I guarantee it comes from inside the fat person as well. I hope that if you or your partner becomes overweight, that you can unlearn the prejudices surrounding weight gain.

Dieting is less healthy than being overweight. Over 95% of diets fail, and with chronic illness and medications in the mix the disabled person is extremely unlikely to ever lose any weight no matter what they do (including gastric bypass surgery, which reduces stomach size and hunger pangs but often causes chronic diarrhea and definitely doesn’t solve all the other weight issues). Amazingly, pretty much every health professional I speak to (including dermatologists, neurologists, and so many others who DON’T specialise in anything relevant) tells me to try and lose weight. Almost all of them suggest gastric bypass surgery. They say things like, “Even five kilos makes a difference” (which I know for a fact is not true as I became diabetic almost 20 kilos ago and my blood sugar varies more with my stress level than what I eat). This is INCREDIBLY HARMFUL and JUST PLAIN WRONG.

There is exactly one up side. Dieting is off the table (pun intended), probably forever. Do try and eat foods that will sustain you, like protein and vegetables. But there is absolutely no reason for you to restrict your eating. Babe, eat WHATEVER you want. You’re gonna be fat either way. Might as well enjoy it.

b) Medical gaslighting and trauma. If you are fat, female, depressed, chronically ill, or a woman of colour (and the prize for “That really really sucks” goes to those who are all of the above) then you will pretty much definitely have at least one doctor who treats you like a hypochondriac and/or moron. Keep an eye out for these common statements: “You’re not sick. You just need to lose weight.” “You’re just aging.” “Every mother is tired.” “Great news! Your test came back completely clear.” “Everyone’s back hurts.” “See an exercise physio.” (NB: An exercise physio can be helpful, but they can also underestimate your illness and injure you.) “How often to you exercise?” “Do you think you might be pregnant?” “Muscle pain is a part of life.” “Get plenty of rest.” “I really think you should see a counselor.” (NB Counselors can be great but they can’t fix chronic illness—just like they can’t fix a broken leg.) “You’re still young.” (Cool so I have decades of pain to look forward to.)

Remember how I mentioned that fibromyalgia averages five years before diagnosis? It gets worse. There are literal medical professionals who believe fibromyalgia isn’t a real disease. Ditto Long Covid, which is overwhelmingly stupid but here we are. The worse part is that they’re sort of right—fibromyalgia is the diagnosis given for a cluster of symptoms that don’t fit any other condition. It’s a ‘recent’ illness in that it only got the name within my lifetime. It’s poorly researched and poorly understood. All of that plus more applies for Long Covid. It’s newer and even less well understood. Even Long Covid specialists are often amazingly unhelpful.

Medical people are human and they make mistakes. But mistakes, especially those based on stereotypes, get people killed. Fat people, women, and people of colour are given less painkillers than other patients, and are less likely to be believed or trusted. There are MANY horror stories eg the woman who went to Emergency with severe abdominal pain and was told to lose weight. She died of uterine cancer.

Understand you’re not alone. Change doctors when you need to.

Time for another cat break.

c) Being poor. You’re almost guaranteed to have a lot less income. If you can stomach cutting back on expenses (having 1 vehicle instead of two; going camping instead of to Fiji, eating at home and having any remaining job-keepers prepare their own packed lunch) then go for it. But remember that no one is perfect and make sure you have at least some dumb stuff that isn’t just about survival eg buying books, eating out once a month at a mid-price restaurant, getting massages. Start your budget with a place to live, bills, food, and probably running a vehicle or two. (Having only one vehicle can mean the sick person becomes completely house-bound…. so don’t do that.) Chris and I almost always get our electronics secondhand (phones, TV, computer games, computers) and we give very crappy Christmas and birthday gifts.

Make sure you have free or low-cost things that you love to do, such as taking a walk, swimming, or sitting in a comfortable chair to watch the sun set while listening to music. And playing computer games. Last night I became obsessed with a really stupid and pointless quest. Giving in to it and staying up way too late was actually a healthy thing to do because it’s a virtually free way for me to NOT be super self-controlled (which I have to be with money). Have pressure valves, and use them before you crack from all the other pressure.

It’s vital to change your expectations about your life, and it’s not easy. I grieved “bring an adult” for many years because the definition of “adult” for many is “someone who financially supports themself”.

Some friendships cost money because the norms of that group cost money eg eating out together. Some friends can adapt to your new circumstances (especially if you’re totally honest with them) and some can’t. Some friendships are worth spending a chunk of your limited income on, but many aren’t. Some friends are extremely beneficial eg some people prefer to host at their house and are happy to pay for the meal without requiring anything (or anything much) from you. Some people are great for ‘babysitting swaps’ where you look after their kids one afternoon and they look after yours the next. Some families step up beautifully and long-term, although most can only handle helping out in a crisis (eg when you’re first sick, or if you’re moving house) or they burn out. Everybody in the world is stressed and overwhelmed and struggling with their own problems, so be gracious.

Try to have a mixture of sick and able-bodied friends—the sick ones will understand you like no one else can, but the able bodied people will be more able to adjust to your needs.

A shocking number of people are struggling to get by in our society, so there are a million interlinked communities out there that are understanding and supportive. Food pantries supply free or low-cost food (and it is often a great way to try something new), and hyper-local FaceBook groups such as Freecycle, Buy Nothing, and Freebies are brilliant for giving and getting free stuff including beds, couches, toys, and clothes (especially baby clothes). Most schools have a second-hand uniform shop and/or a parents group where people give away or sell outgrown uniforms. I emailed my kids’ school recently about camp fees and they paid for the whole thing (nearly $400). Our morgage rate was recently reduced almost a full percentage point thanks to desperation + our morgage broker. CHU and Homeground Real Estate offer below market rate housing for renters in Canberra. It is definitely worth considering a group house situation, especially if you are single and in danger of being socially isolated.

The only up side is that you’ve become part of a major global movement against capitalism and greed. You HAVE to find a different way of living. You HAVE to value yourself for more than your earning capacity. You HAVE to resist the constant siren call of “Buy this thing! It will make you a better and happier person!”

I like to think of myself as semi-retired, and take joy in that. I only get about four functional hours a day, so I nap a LOT, read a LOT, and watch TV a LOT. If I wasn’t sick, my life would look like Paradise. It also means that I can fetch the kids from school and then be at home all afternoon (probably asleep, but still THERE).

I often pretend to be lazy rather than sick (or poor) so I don’t bring down the vibe with friends, which is a dangerous strategy as it leads to people thinking I’m faking all of this. But it’s still worth it sometimes so I don’t have to spend five minutes explaining why I can’t go and try axe throwing (can’t pay, and would almost certainly injure myself badly due to the throwing motion), or to an art gallery (can’t walk that far and don’t feel comfortable asking you to push me around in a wheelchair all day), or to a school play (gives me panic attacks, and two hours in a chair that’s not an armchair can leave me in extra pain for weeks), or whatever.

d) Chores. Once again, you need to severely lower those expectations. My kids are both autistic and Lizzie also has ADHD (which Chris also has…. out of the three of them, 8 year-old Tim is the most likely to actually put his friggin’ rubbish in the bin) so they’re not as independent as I like but oh well.

Work out how much your partner can take on, and don’t push them past that.

If you have to have clean washing picked through day by day on the couch (rather than put away), so be it. Focus on basic hygiene and making sure everybody eats (shopping can be done online although it is a little more expensive; it is definitely worth cooking larger meals and then just reheating leftovers later; don’t buy fancy crockery or cooking things that can’t go in the dishwasher).

Another kitten break.

e) Loneliness and Depression. Very likely.

If it helps, it may be worth getting a pet but only if the able-bodied person is able to deal with their poo, food, and water. Puppies and kittens are a lot of work but older pets are easier to adopt and more likely to be suitable to a disabled lifestyle (plus you can talk to RSPCA staff and get a sense of which one’s personality is best for you). As you can tell, my cats are essential to me.

Try to do low-impact exercise if you can (swimming, bike riding) but do NOT let anyone (especially doctors) pressure you into exercising too much as it can be very dangerous for chronically ill people. “Graded Exercise” programs have harmed many many people.

Get outside if you can. Or possibly take vitamin D supplements.

Enjoy what you can, like TV or picking fresh flowers or whatever works for you and isn’t illegal.

If you’re not able to see people face to face, the internet is a massive source of community. Use it.

Connect to other chronically ill people. There are a LOT, and many many internet/social media groups.

f) Christmas. For years I would use Christmas to get some of the things I couldn’t buy myself, such as clothing (I’d ask my mum to go shopping with me). But that only works if your family accepts and pays attention to wish lists and/or is willing to give you vouchers to stores you like. Usually Christmas and birthdays are really difficult due to finances. A lot of adults, including able-bodied adults, feel stressed by Christmas and will appreciate an honest “Let’s just not give each other gifts for Christmas—ever”. Others would crawl over broken glass if it meant they’d get a home-made gift.

h) Parenting. Find a way to connect with your kids that doesn’t make you sicker. Bed time rituals are usually great (if there’s a comfy chair in their room or you’re able to sit on their bed). I’ve taught my kids to come into my room and jump into my bed with me. To talk; to play on phones side by side; to read or to be read to; to practise times tables; to pretend to be a cat. It works really well for Tim but not as well for Lizzie. We are also watching some great TV shows together, like Avatar and She-Ra. My kids have unlimited screen time (screen time can be essential to autistic kids, so it actually works well for all of us).

What advice do you have for people who have become chronically ill?

This post was brought to you by this tweet:

I focused on disability in this post, since I’m more or less an expert after eight years. But my father died last year and there was SO MUCH paperwork crap to sort through.

Have a think about what your partner/friends/family would have to deal with if you dropped dead without warning, and see if there’s a way for you to make it less awful—making a will; writing down passwords; sorting through that filing cabinet you’ve been putting everything official-looking into since 1994; etc.


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