Words by Mia Maraschino, Dahlia Daye, and Maddie Belle | Photography by Adam De Ville
As the year draws to a close, we Sirens are winding down and ticking off the last of our to-do lists. It has been a very long year for all of us, and we are most definitely looking forward to relaxing and recuperating over the Christmas period - we’re sure you all are too! Recently a few Sirens were discussing the various ways in which their chronic illnesses have impacted their lives over the year, and reflecting on how they’ve adapted to such big changes in the studio and their individual work.
By definition, a chronic illness is a lifelong condition that is persistent in its symptoms. This means the person has to adjust to the demands of the illness and often also the therapy used to treat the condition.
Chronic illnesses usually cannot be cured completely, but are able to be controlled or managed through medication & lifestyle adjustments.
In this blogpost Dahlia will be referring to her experience living with Fibromyalgia, Mia speaks about their Crohn’s diagnosis and Hypersomnia, and Maddie gives insight into life with Endometriosis and PCOS. Please note that these experiences are entirely individual, and we do not speak for everyone living with the same or other chronic illnesses.
Autoimmune:
An autoimmune disease is a condition in which your immune system mistakenly attacks your body. The immune system normally guards against germs like bacteria and viruses, when it senses these foreign invaders, it sends out an army of fighter cells to attack them. Normally, the immune system can tell the difference between foreign cells and your own cells. In an autoimmune disease, the immune system mistakes part of your body, like your joints or skin, as foreign and attacks those healthy cells. In most cases, the cause of this is unknown.
Diagnosis:
The process of determining which disease or condition explains a person's symptoms and signs. Sometimes this can be obvious or straightforward, other times a diagnosis is given after a lengthy process of elimination. Not all chronic illnesses can be diagnosed with tests/scans etc, and often multiple symptoms aren’t immediately linked by even the wisest of health professionals.
Fatigue:
A feeling of constant tiredness or weakness and can be physical, mental or a combination of both. It can worsen during flare-ups, and can manifest as a reduced capacity for work and daily tasks, or affect concentration and efficiency.
Flare-ups:
An exacerbation of a chronic disease. Sometimes referred to as a flare-up, a flare occurs when symptoms of a disease that has been present for a time suddenly worsen. The onset and length of a flare cannot be predicted, so when they happen we turn to our ‘last resort’ management strategies.
Fogginess:
Brain fog/fogginess isn't a medical condition itself, but rather a symptom of other chronic conditions. It’s a type of cognitive dysfunction involving memory problems, lack of mental clarity, poor concentration, and inability to focus. Some people also describe it as mental fatigue, though its affects are experienced differently person to person.
Prognosis:
A medical term for predicting the likely or expected development of a disease, including whether the signs and symptoms will improve or worsen (and how quickly) or remain stable over time; expectations of quality of life, such as the ability to carry out daily activities; the potential for complications and associated health issues; and the likelihood of survival (including life expectancy). A prognosis can be affected by certain factors such as access to medical professionals and treatments, as well as access to education and knowledge on their condition.
Remission:
The reduction or disappearance of the signs and symptoms of a chronic disease. A remission may be considered a partial remission or a complete remission, where its symptoms disappear from the body entirely.
Chronic illnesses are still widely misunderstood and many people never hear of them until someone they know is affected. A few common misconceptions that chronically ill folks face in day-today life include:
“Oh, but you don’t look sick?”
Chronic illness often can’t be seen on someone’s physical body!
“Everyone gets pain/cramps/soreness there”
That’s true, most people will experience some form of pain in their lives, but the difference with a chronic illness is that the pain is very specific, heightened and persistent.
“You were fine the other day… Are you really sick?”
Yes. Yes we are. No two chronic illness experiences are identical, and neither is our day-to-day. Some days, we are full of energy! Other days, we can’t get out of bed. Such is the nature of a chronic illness.
“Western medicine will just make you more ill.
You should try this natural therapy that I heard about…”
No thank you! As nice as it sounds, yoga and kombucha are not going to cure us.
The spoon theory is a creative metaphor coined by Christine Miserandino. It is used to explain the reduced amount of mental and physical energy available for day to day tasks and general living as a result of chronic illness or disability.
Briefly, each spoon represents a portion of energy that a person has and completing a task will cost you a certain amount of spoons. A person with a chronic illness or disability may only have 10-15 spoons per day. When getting out of bed, taking a shower, preparing meals and getting dressed all use a few spoons each the person has to make very calculated decisions on what else to use their spoons on.
Self care, which is vital to managing chronic illness, also takes spoons!
Often, chronically ill folks use most of their spoons on managing their illness.
Maddie makes sure she has yummy and healthy food available, as well as a hot bath or a sauna to soothe her pain. Mia takes daily immunosuppressants and attends hospital for IV infusions every 8 weeks, makes sure not to consume things that aggravate their body, and takes prescription medication to increase awakeness/alertness when needed. Dahlia takes daily prescription painkillers, requires lots of rest during the day, and sees allied health professionals.
Self-care is often mistaken for self-soothing, which we need to do too! Self-soothing actives include going for massages, TV bingeing, getting out into nature or having quality time with loved ones.
Are you wondering how to be a supportive friend to someone you know with a chronic illness? Here are a few top tips. If you are already engaging in all the things in the “Do” section, chances are your chronically ill friend thinks the world of you!
Do
Ask your friend how they’re feeling
Be flexible with plans changing or being cancelled
Check in with your friend to make sure an activity you’re planning is accessible to them
Send us genuine, scientific research - after you’ve checked in with us if it’s okay
Get excited for us when we have little breakthroughs, even if they don’t seem like a big deal
Don’t
Give unsolicited “medical” advice, especially a sentence that sounds like “Hey, I just had a thought, do you think *this* might be the cause of your illness?”
Stop inviting your friend to social gatherings and events, chances are they really want to come. You never know which event may line up with their spoon schedule!
Make assumptions about what your friend can or can’t do. More importantly, do not make assumptions on what they should or shouldn’t be doing. This kind of advice is best left to their medical care team.
Although having a chronic illness can sometimes feel like a limitation, there are a few things that we appreciate more about ourselves now than we did prior to a diagnosis.
"I’m extremely grateful to have enough privilege so that I have access to healthcare. So many people do not have that. It has also made me more aware of my own body and things that I need to do to take better care of myself." - Maddie
Mia and Dahlia also agree, and add that having a chronic illness comes with psychic abilities. Just kidding! They do, however, feel as though over time they become better at predicting flare ups and knowing which management strategies will be most effective when illness hits.