We are told that people with chronic illness are lazy. Full-stop. It's the line we hear so often isn't it. Or if not said explicitly, then there are little hints and mildly disguised accusations. Perhaps we should 'try more', do some exercise, put a bit more effort in . . .
Yet when I think about it, the people with chronic illness that I know are often incredibly busy. Sadly, often with tasks that aren't fun or exciting, but completely necessary to manage health issues.
This post was written with insights from many living with chronic illness conditions through my @through.the.fibro.fog Instagram - thank you to everyone who contributed their thoughts!
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What does a duvet day look like with chronic illness?
Before talking about all the 'things' we have to do, I want to touch on the idea of a duvet day. Now when you are in generally good health, a duvet day is a cute concept. There's an idea that we lie around watching TV, wearing cute pyjamas and perhaps with an equally cute dog (or cat!) keeping us company.
With chronic illness though, a duvet day isn't cute. It isn't fun, or being lazy. Instead it's an enforced rest because we are in pain, have other symptoms and feel really unwell. It's also often really, really boring. So if you have to stay in bed, please don't tell yourself you are lazy. You are doing the best for your health, and that's the most important thing.
Now onto all the 'things' we have to do . . .
1. Attending medical appointments
There are weeks that I have had a medical appointment on every week day, and occasionally more than one per day. Perhaps they are only ten or twenty minutes long, which doesn't seem like much does it?
But let's factor in the travel time (often several hours for me), time sitting in a waiting room (again, may be hours if you are unlucky and in an over-booked clinic), time spent quietly sitting in a coffee shop afterwards (actually not a luxury, but a necessity to eat, drink and just quieten an over-excited nervous system) and then of course, the travel back home.
Many of us live with multiple chronic illness conditions, which of course means multiple appointments. We see doctors, nurses, perhaps dieticians, occupational therapists, physiotherapists, psychotherapists and other health professionals. Appointments aren't occasional, but frequent and stressful, and tiring of course.
2. Being our own medical secretary
All those appointments means one thing: having to organise them.
That doesn't just mean waiting for an appointment letter coming through the door. Often it means chasing appointments, re-arranging as several clash, booking scans, physiotherapy or more. It means realising we have 'slipped through the system' and somehow got missed, and asking over and over for an appointment.
Time is spent on hold, listening to bouncy 'on hold' phone music and hoping that someone will actually pick up the phone . . .
3. Dealing with insurance companies
As I am in the UK, I am incredibly fortunate to have the NHS and so do not have to deal with insurance companies. I truly know how lucky I am, as the issue of insurance has been raised so many times by my US friends.
4. Organising prescriptions
And it isn't just appointments, it is also organising prescriptions for vital medication. Again, this may seem simple from the outside. But no, it can mean trying to get a prescription hand-written by a GP because it is a 'special order' or, for my US friends, navigating the insurance system.
Picking up the prescription? That's the easy bit. Don't get me started on trying to organise a delivery . . .
And for most of us, we spend time organising our medications (and supplements) into pill organisers (I use the Sistema pots to go for this) so we don't forget to do it. Not the most fun Sunday morning task . . .
5. Doing physiotherapy / physical therapy
Many, many, conditions require us to do physiotherapy. It could be for musculoskeletal issues, vestibular rehabilitation, pelvic health and so many other conditions and symptoms.
It is time-consuming to do this, and requires a lot of focus and sometimes discomfort too. People with chronic illness are lazy? Nope, we are often to be found actively following a programme of movements and exercises . . .
6. Cooking for a specialist diet
Food intolerances are common with chronic illness conditions, and some conditions such as mast cell activation syndrome may require following a specific restricted diet such as the low histamine diet. Moreover, some conditions require careful monitoring of foods consumed. For example, those with Antiphospholipid syndrome have to monitor their vitamin K and amounts of blood thinning foods, and often avoid certain foods if on warfarin*, and those with coeliac disease must follow a gluten-free diet.
This means extra time hunting out suitable foods, checking food lists and of course time cooking in the kitchen. Take-out or a pre-prepared meal just may not work and trigger symptoms.
*thank you to Sheryl of A Chronic Voice for this info!
7. Purchasing supplements
Alongside medication, many of us are advised to take supplements for our conditions. I am low in vitamin D unless I make sure I use my BetterYou vitamin D spray (tablets just don't work for me, probably due to malabsorption), and my ferritin levels are still not the best so I am increasing my iron tablets (under medical supervision).
Buying supplements isn't the 'fun' online shopping you do when treating yourself to a new top. It's a rather boring and sometimes expensive task.
Related post: fibromyalgia and vitamin D deficiency
8. Exercise / movement
Exercise can mean very different things for each of us, depending upon our conditions and limitations. It can mean a few leg raises each day, some stretches, a few minutes on my pedal exerciser or a walk or even a run.
It can often be tricky to talk about exercise and chronic illness, and it is vital that people seek professional help for their personal needs and whether exercise is beneficial or potentially harmful. We all have different needs (although I would say that rest is a requirement for everyone with chronic illness I know).
For me, exercise is beneficial, with stretches helping my stiff fibromyalgia muscles and pedals and walking helping me with migraine and dysautonomia.
Yes, rest is an 'activity' if you ask me! And it was the aspect of chronic illness life that the most people messaged me about after I said I was writing this post. Many of don't actually find rest to be easy, in fact sometimes it can be kind of boring. But it really is a necessity.
We need to calm overactive nervous systems, rest our bodies and minds and and save precious energy. You know, for all the other tasks we have to do . . .
Some ideas for restful activities: meditation, listening to podcasts or audio books, colouring books, drawing or painting, playing with a pet, arts and crafts.
Well, phew is all I can say. Are people with chronic illness lazy? I think all these 'activities' show that we definitely are not, quite the opposite. And of course, many of us do all these things while also working, raising a family, caring for others and so much more.
So in my view, I think those with chronic illness work incredibly hard. Yet we don't really get that recognition, and are understood to spend our days watching TV . . .
Don't forget to pin to your health boards!