Shit Things People Say To Someone With A Chronic Illness
If I had a dollar for every time I’ve had to stop myself from eye-rolling, I'd probably be off ‘living the dream’ on an island somewhere. Unfortunately, I would have made a vast percentage of that fortune off the back of stupid shit people have said to me in conversations about my Chronic Illness.
When you get diagnosed with a Chronic Illness, life demands two things. One, that you make A LOT of changes to how you live and two, changes to how you live are made for you whether you make them or not. When I was first diagnosed I fought tooth and nail against both of those demands, that is of course, until my doctor informed me that if I carried on the way I was, I would be in a wheelchair in a matter of years.
This was, what you might call, really fucking motivating. As time went on, I made those changes and stepped into my power as a Chronic Illness Advocate. Many of these changes altered my life dramatically, and as time went on, I began to reflect on the many reasons I had battled so hard against these changes. I realised that among others, one of those reasons was steeped in shame. I was ashamed of how others would perceive me as a person with a disability.
To their credit, many people that I am blessed to surround myself with proved me wrong. That being said, many others responded in ways that not only matched what I had been expecting, but exceeded it.
So in an effort to give perspective, spread knowledge and perhaps stop somebody else from the repeated pain of misguided hurtful comments, here is a list of shit things people say (that they definitely shouldn’t) to someone with a Chronic Illness.
🙄🙄 Any comment AT ALL about a change to physical appearance
Medication side effects like weight gain, looking tired AF or in my case, shaving your head to reduce the pain I experience from an extreme pain response to touch (a symptom of Trigeminal Neuralgia) are just some examples of potential changes to appearance from Chronic Illness. This may shock you, but we are already insecure about them and pointing them out is shattering for someone's self-esteem.
🙄🙄 “I get really tired sometimes too”
The unfortunate truth is that in our modern reality, though not having children is more accepted than in the past, it is still a choice that needs a “reasonable” justification. It seems to be the case that women face a biased jury of professional acquaintances, friends, family members and other women, set to decide if their reasons for not having children are deemed “good enough” for them to be allowed to make that decision.
🙄🙄 “But you don’t look sick”
Ah the perils of invisible illness. This is so hurtful and though sometimes it’s meant as a compliment, it fills us with self-doubt and can even make us feel as though you are thinking we are dishonest.
🙄🙄 “Oh yeah, I did the MS Readathon when i was in school”
As a kid I was a massive book worm. I used to stay up late at night, reading under the covers with a torch. I lived to read and when the MS Readathon would roll around I’d be hassling my neighbours and family to sponsor me to read as many books as possible to raise money for the MS Foundation, largely for the prizes and not really knowing what MS was. Turns out the Readthon is still a thing and kids are doing it for the same reason I did, which is awesome and helpful, but more awareness and humanising the illness should also happen in schools I think.
🙄🙄 “I’m sorry to hear that”
Again said with good intentions but honestly it is meant as a pity. We don’t want pity. Nobody wants pity. It kind of feels like a cookie cutter response you feel obligated to offer and mostly shows your discomfort with being around us. Which to be honest, really feels like shit.
🙄🙄 “Have you tried changing your diet?”
Listen, I have a chronic illness and no amount of kale is going to change that. Chances are we have tried everything and anything you can imagine and this comes off as belittling and patronising.
🙄🙄 “Have you tried taking these vitamins?”
Read “have you tried changing your diet” again. Also we take a tonne of pills and supplements, more than the average person so chances are we’re already filling our immune systems to the brim with all the things!
😔😔 Not inviting us to things anymore
This isn’t an eye roll because this just makes us feel miserable. A Chronic Illness often means we are far less likely to attend events. This doesn't mean we don't want to be invited and we’ll try our darndest to be there, but sometimes our bodies say no. Please don’t stop asking us, because when you do it sucks and it really hurts bad.
So you may be thinking, well WTF do i say then?!
So I thought I’d hook you up with some good shit to say to someone with a chronic Illness too.
🤗🤗 “Wow that’s really shit, I imagine it makes you really mad”
🤗🤗 “How does that affect you?”
🤗🤗 “Is there anything I can do to help?”
🤗🤗 “I know everyones MS is different, how does it show up in your life?”
The reality is, everyone's experience of Chronic Illness is different. The best way to talk about someone's experience with them is to ask them about it. Ask them what, if anything, they feel comfortable saying.
If you want to find out more about life with a chronic illness, jump over to my Instagram and message me to connect!
Selfish, Child-Hating And Unfulfilled.
Is This The Perception Of Childless Female Entrepreneurs?
Childless or not, professional women face a myriad of battles driven by their choice to pro-create. But as a seismic shift occurs to celebrate the #mompreneur on social media and beyond, female business-owners continue to face a cultural discrimination, perception and radical assumptions based solely on their choice not to have children.
In the 1970s, a woman named Marcia Drut-Davis appeared on 60 Minutes in a segment and publicly explained her decision to not have children. The outcome of that appearance saw Marcia being ostracised, losing her job and receiving threats to her life. Such were the opinions of the times. This vile treatment of Marcia of course would not be tolerated in a modern day society. That being said, can it be denied that the loud and proud vilification of childless women in the 1970’s still exists in mutterings and musings in 2021?
The Gender Perception of Ambitious
The stark contrast between the perception of childless men versus childless women is steeped in a deeply entrenched societal expectation. Partially, this is fed by the fact that men can produce children in later life. But in all honesty, it is predominantly fuelled by an unrelenting cultural expectation that continues to stereotype womanhood with motherhood.
The reality is this. At social gatherings, the first question, more often than not, to the Father is “How’s business?” and to the Mother is “How’s the kids?”. Even a simple hyphenated adjective such as career-driven or work-focused usually produces totally different perceptions for men than women. The latter of course, being the negative.
The Acceptable “Why”
Deakin University conducted a study into why childless women are childless. They found that -
“While for many women childlessness is about choice and circumstance, women also feel the need to explain and justify their childless status. Furthermore, these findings indicate childless women are stigmatised and socially excluded.”
The unfortunate truth is that in our modern reality, though not having children is more accepted than in the past, it is still a choice that needs a “reasonable” justification. It seems to be the case that women face a biased jury of professional acquaintances, friends, family members and other women, set to decide if their reasons for not having children are deemed “good enough” for them to be allowed to make that decision.
Add this to the growing possibilities to have children where before it may have been more difficult, fertility options, adoption and so on, and it seems that if women don’t answer with a climate-change based response or some other self-sacrificing response they are often still subject to criticism and presumed to be selfish instead. The fact is however, there are a thousand reasons women don’t have children. From those that are health or fertility based to financial to environment to the simplicity of not wanting to do so. All legitimate and none that should be judged.
The Financial Impact of Having Children For Women In Business
Business is synonymous with income and for women, having children has a huge impact on how much income they will earn. A study published by Vox and conducted by The National Bureau Of Economic Research in Denmark reveals some shocking statistics about how having children affects a woman's ability to reach higher income and for men, how it has little effect at all. The image below outlines how the birth of a child reflects in a man’s earnings.
The following image shows the shocking contrast between the effect on women’s earnings in comparison.
Of course this study was conducted in Denmark, but it reflects the world over.
So Why Is This?
“Although women comprise nearly half of the U.S. workforce, they still fulfil a larger share of household responsibilities. Married or partnered heterosexual couples in the U.S. continue to divide household chores along largely traditional lines”
For the most part, women take on the majority of the housework and childcare and with a growing expectation from investors, the workforce and entrepreneurs themselves to be flexible and work long hard hours, I would argue that for women, the “you-can-have-it-all” narrative could be seen as a fantasy. Often leaving women with a choice between continuing to thrive, flourish and grow in their businesses or give birth to a child.
“For me, not having children has been a choice that has come with many consequences. It’s left me alienated by my friends with kids, uninvited to events because I don’t have children. When it comes to women who don’t have children people make assumptions that it’s a can’t not a won’t. When they find out it’s a choice I have made I feel the air around me weighed in judgment.
In a professional capacity, I believe changes need to be made so women with children can work remotely with more flexibility.
In a personal capacity, Women need to stop asking other women about their child status all together.”
The Aftermath?
The perception of childless women in entrepreneurship reflects narratives and expectations of gender that extend far beyond that of just business.
Frankly, it would seem that women in entrepreneurship continue to be judged for not having children. Where in fact, what should be judged are gendered societal dynamics, expectations and injustices that create a world in which men are celebrated for their ambitions, experience no impact to their earnings if they have children and carry no expectation to equally contribute to the household or child related responsibilities.
For women however, you’re damned if you do and damned if you don't.
Women face a choice between having children, that likely brings a huge drop in income, relentless responsibility and burnout. Or not having children, that brings intense scrutiny, judgement and criticism.
Of course this is not the case across the board. This is based on a statistical analysis that narrates the majority, and there are many different types of families with many different work and household dynamics.
But the case still remains that as a society, we must stop judging women for any choice they make within their own lives. Instead, we need to question that which creates an environment where once again, women continue to find themselves making these choices from a far weaker position than that is experienced by men.
Hustle Culture: The Good, The Bad and The Ugly
The word Hustle has a pretty unexpected origin. It dates all the way back to the 17th century from…
“Everyday I’m Hustlin”
The word Hustle has a pretty unexpected origin. It dates all the way back to the 17th century from the Dutch word “husselen” which means to shake or toss. As the years went on the meaning of the word grew to mean “to hurry” or, pretty ironically, “to obtain by begging”. Which when you think about it, really gives a new meaning to Rick Ross’s hit song.
Jump forward into 2021 and #hustle has become a buzzword used regularly by freelancers, single-mothers, musicians, strippers and pretty much anyone who sees themselves as working harder than the norm.
But perhaps, driven by the narrative of the likes of Gary Vee and other celebrity entrepreneurs, most recently there is one category that has cemented its relationship with hustle culture more than ever.
Business owners.
The Good
Life's not all sunshine and rainbows and if you want something, you better be prepared to go after it. As a serial entrepreneur I am no stranger to hustle. Hustle, by it’s modern definition, is working aggressively and relentlessly for your business to thrive.
There is something incredibly empowering about when you decide to do things on your terms but the simple truth is, hustle isn’t a choice if you want to be successful. Building a business is one of the hardest things you can choose to do. The failure rate is high, the failures are many and if you are not ready to give it your all? The reality is, you aren't going to make it.
The “good” side of hustle culture is seeing your ideas come to life and then come to fruition. You are your own boss and the experience of putting in the hard work, testing and then launching a product or service, offer or anything of that nature is incredibly rewarding when you sit back and say "Ahh I did that thing”.
Hustle is something that you have to love and when you do, it will repay you for all that you put in.
The Bad
As hustle culture explodes, so unfortunately does the expectation for quick turnarounds and results. Many who are putting in the hustle are expecting short term gain. As if six months of relentless work will bring the same results that in reality take years of the same work-ethic.
As a result of this, Failure is seen as being something bad. Where in reality, you need to fail multiple times to refine processes, get better at doing the things and really iron out any kinks and issues. Not all products or offerings always succeed, but rather we need to look at what we learn and what we are taught by that failure for the next time around.
The Ugly
In recent years, with the emergence of the term “toxic hustle culture”, there has been a number of conversations internet-over discussing the damage the hustle narrative is creating.
Hustle is imperative, but it must come with boundaries.
Without them, what was once hustle quickly spirals into what every entrepreneur dreads.
Burnout.
Burnout is a state of exhaustion caused by exposure of the body to excessive stress for a prolonged period of time. I’m not talking about feeling tired at the end of the day. Burnout brings an unforgiving fatigue that can cause anxiety, lack of creativity, complete loss of energy, disillusionment, helplessness and so much more.
Not to mention the long term effects on your physical health.
I regret to say that I myself have experienced “the ugly” side of hustle culture more than once. When it comes to living with not one but 2 chronic illnesses and OCD, public enemy number 1 is stress, and if I don’t mange myself and everyone else around me, burn out and breakdown are incredibly real.
In the past I’ve worked 90-100 hour weeks and my body quite literally shuts down. I can’t walk, I cannot get out of bed and my brain fog is the worst. In the past I’ve even been hospitalised because I’ve just pushed so hard and caused myself to relapse; in turn resulting in the biggest of setbacks and having to spend 5 days in hospital on steroids, where all of this could have been avoided if only I’d taken the time to STOP.
I’ve worked myself so into the ground that I’ve had social engagements and events to attend and when it comes around to going and doing the thing, I’m a shred of a human and the social anxiety and stress kick in. I have missed many celebrations and milestones, which after a while people stop inviting you along to.
What's the verdict on hustle culture?
Hustle itself is a necessary trait in order to thrive in business.
The reality is that hustle itself is not the problem. But the lack of self care, self awareness and self prioritization that have become intrinsically linked to the word have led to the perception that the “hustle” itself is at the core of the issue.
Hustle becomes problematic when it is the soul force from which an individual is operating. There is a belief that if work is not every single minute of every single day then you are not “doing it right”.
Of course the opposite is true. If you are not taking care of yourself and performing at your best, no amount of hustle is going to substitute what would have been there had you been operating from full capacity.
I have hustled more than most. But if that is all I had done, it is likely I would not be here today.
Why Journaling Is A Must In My Life!
It’s no secret that I’ve always loved to write. I have been journaling since I can remember, and…
It’s no secret that I’ve always loved to write. I have been journaling since I can remember, and I’ve teachers from primary school who remember me submitting journals filled of writing, some of the best they’ve read (not to brag)… My years of angst and finding my way into the world have all been documented. One day I plan to publish my 'Chrissy's teenage years' entries.
Anyone who knows me well is aware of my love affair with stationery. There's nothing I love more than losing myself in a store full of pens, notebooks, and journals. Most recently on a late-night K-mart spending spree, I “accidently” 😉 bought 31 of them LOL. With that said though, it’s my happy place! To me, a new blank journal is full of countless opportunities and endless stories to tell.
Journaling is part of my daily self-care constitution. It's a practice that offers me a chance to assess and evaluate what's going on. From the small trivial things that are obviously wearing on my soul, to the big picture things that need to be evaluated and workshopped.
In this article, I want to share with you my journaling tips, as this practice has helped me achieve many of my goals and dreams, and I imagine it can help you to do the same.
To get started, buy yourself an A5 notebook and a special journaling pen. On the front of the journal, state your intentions. On the cover of every journal, I write this: "This is only for me, and no one else. As tempted as I am, I never re-read my entries; that's in the past. I will only write three pages. Even if I have nothing to say, I do. Just write freely."
Now you might be thinking writing three pages each time is going to be hard. But as I write, the shit starts to come. It can be as simple as saying, 'Today I am writing with a blue pen, and I like the way it writes.' You just gotta write! For me, writing by hand slows me down and lets me release my inner thoughts. I hammer away at a keyboard all day. When I'm journaling, I find my zone and let my pen do the dancing for my soul.
I write first thing in the morning every day. Anything that is niggling at me or any self-sabotaging thoughts, I address it then leave it in my journal. Every day tells a different story. If I went to a musical the night before for example, my ticket would go into my journal, or I might even spray on the page the perfume that I'm wearing for the day. That's what I love about journaling, no two days are ever the same and there is always something to write about.
I keep all my journals. Why? Well, who throws out their life story! For me, it's a safety mechanism. Who knows? One day my journals might make a damn good book!
Recently I have started journaling about covid. Let's face it, our daily lives at the moment are going to make the history books. I didn't expect to be living through something like this. There’s so much to process and that's why I've started journaling this separately.
My vision is to not only achieve my own dreams, to do what I love but to help others achieve their own success and potential. My work speaks for me. I'm hard-working, motivated, passionate, and free-thinking. Keeping a daily journal has helped me through every chapter I have lived and wouldn't be where I am today without doing it daily. Checking in with yourself allows for clarity.
Life is to be lived, and it's the little but enriching things we do each day that have the most significant impact.
Happy journaling, my friends!
Making Self-Care A Priority Not A Necessity
Self-care is a personal matter. Everyone will have a different way to approach it and…
Self-care is a personal matter. Everyone will have a different way to approach it and traumas and mental health issues play a part in making sure that you pick the correct steps to perfect your routine.
Let’s take me for an example, I love a holistic approach to my wellbeing so that I can meet my personal and professional goals and commitments head on and without delay.
A good self-care plan should help reduce stress, time management, relaxation, mindfulness, avoid procrastination, create assertiveness and create healthy habits.
Don’t worry, I don’t wake up smiling and on a constant high. Even the most well-adjusted people and professionals need a good morning and night routine. But the one thing I can say is everyone needs a self-care plan, and you need to commit to it every day.
It takes four weeks for a habit to turn into a routine. So remember to re-assess how you are going at the end of one month, and then again after three months.
What is Self-care?
Self-care is taking care of yourself, so that you are functioning at your best to take care of the people and duties that are counting on you. Often when people hear self-care, they immediately think taking time to be self-indulgent… or even selfish. But this is a popular misconception that is just plain wrong!
Basically, self-care means looking after all aspects of your health and wellbeing. From eating the right foods, maintaining your personal hygiene, getting enough sleep and regular exercise, right through to taking time out to just ‘relax and chill’. Self-care means being aware of everything you need to do to keep your mind and body fit and healthy.
Incorporating Self-Care Into A Hectic Schedule
Creating habits for self-care is not a priority for most people. With the most prevalent excuse being “I just don’t have the time” or that it is overwhelming to start. However, there are too many benefits to pass this up.
Let’s start small and break down each category into Work or professional, Physical, Psychological, Emotional, Spiritual and Relationships. From there, you can create a daily schedule of events that need to happen from your morning routine until bedtime.
Don’t overwhelm yourself by going in-depth with elaborate efforts like weekends away. It is more important to focus on daily, short, frequent self-care activities.
Here is a self-care plan template to get you started – you can download it for free.
Here is breakdown of what each self-care category should mention:
Work or professional
Be strict with times that you work from and boundaries set between clients and staff
Read professional journals
Attend professional development programs.
Write goals for the week, month and year.
Stick to a routine and don’t skip the daily bathing and dress in that outfit that gets you feeling your best self.
Physical
Develop a regular sleep routine.
Aim for a healthy diet.
Take lunch breaks.
Go for a walk at lunchtime.
Take your dog for a walk after work.
Get some exercise before/after work regularly.
Sing. Put on your fave songs and belt out a tune. Also jump and dance around your home.
Psychological
Keep a reflective journal.
Seek and engage in external supervision or regularly consult with a more experienced colleague.
Engage with a non-work hobby.
Turn off your email and work phone outside of work hours.
Make time for relaxation.
Make time to engage with positive friends and family.
Emotional
Develop friendships that are supportive.
Write three good things that you did each day.
Play a sport and have a coffee together after training.
Go to the movies or do something else you enjoy.
Keep meeting with your parents' group or other social group.
Talk to friends about how you are coping with work and life demands.
Spiritual
Engage in reflective practices like meditation.
Go on bush walks.
Go to church/mosque/temple.
Do yoga.
Reflect with a close friend for support.
Relationships
Prioritise close relationships in your life e.g. with partners, family, colleagues and children.
Attend the special events of your family and friends, even if it’s a phone call or Zoom at the moment.
If you need more:
Remember that there are a multitude of professional support services out there, so you can always chat to qualified health professionals if you need more at any time too.
Looking for self-care ideas?
This is my (Chrissy) self-care routine.
My Day starts like this:
30 mins of Mediation mindset for the day
3 page Journal entry and write down the things that I am grateful for
Pick my tunes for the day, and even a hint of my lovely singing voice comes out
Breakfast, Coffee (who can live without this), Vitamins (a MUST do).
Note: These are my vitamins – but you take what is relevant to you and consult a naturopath for the correct ones. I take multivitamins, Vitamin D, Apple cider, Emu oil turmeric and ginger tablets.
Shower – I do add in aromatherapy oils or streamers into the shower (my favourite at the moment is lemongrass, cinnamon and peppermint). To me I see showers are ‘washing away the crap’. Get a clear head and a good mindset to start the day ahead.
Dress in full clothing with something fresh and feisty like my earrings, shirt or head piece (dress like you are going out and still seeing people).
To do list - it is important to segment your list into categories. I like to do a daily FOCUS list, and then a weekly list of GOALS (2 goals for the week), FIT IN, BACKBURNER.
Note: Also make sure that you are setting goals for the month and year.
I like to ensure that I have affirmation either in front of me or I find them, and say them out loud, and while you are saying these affirmations make sure you are taking deep breaths. There are heaps of apps or podcasts that play this over and over.
My Day ends like this:
I finish off by doing my Gratitude journal and 3 things that I am grateful for. It could be work related, or someone simple like I have a home. There is power in writing down what you are grateful for.
With my MS, I need to stretch every night. This also takes the tension out of muscles, increases blood flow to your muscles and calms your mind.
I love skincare and always do this before bed including adding in a mask and serum
Night time diffuser – my favourite is lavender, mandarin and ginger oil.
Note: Lavender oil helps aid sleep.
Music – Beach waves and nature American with pan flute
Do you have an amazing self care routine, tried tips or tricks? Let me know I’d love to hear.