Well, 2020 sure is something, huh?
I had the idea for this article in December after a difficult personal month with family impacted by the bushfires. After some consideration, it felt a little too personal and not relevant enough to others to share to this blog.
And then the last three months happened.
Fires, floods, pandemic, political scandals, workplaces closing down and suddenly we can’t buy toilet paper. That’s just the macro level, big-picture stuff. Underneath all this, our personal lives keep on keeping on.
For me, that start of 2020 has been a house move, the passing of a much-beloved pet, family members battling cancer, and, after over six years of Alopecia Areata Universalis, my brows are growing back. In the wrong place. Urgh.
It’s a whole lot. And we’re all feeling it. Even if you haven’t been directly impacted by fires, workplace closures, or sudden lack is tissues, we’re all feeling the instability and unpredictability.
I’ve always felt that unpredictability and lack of control are the hardest parts of Alopecia Areata. I’ve also always thought that living with this condition must teach us resilience to unpredictability. Now? I’m not too sure. If I’m honest, the start of 2020 has been really, really difficult.
I’m generally very accepting of my lack of hair. But when it suddenly changes it’s mind and does something wildly out of the blue, it completely shakes me up. It’s so uncomfortable. It’s a gut-punch reminder of how much we can’t control.
I’ve been doing a lot of thinking about what gets us through tough times. How can we stay motivated and optimistic when faced with challenges and disasters? What are the building blocks of resilience and our best lives? Basically, how do we cope?
AAAF has done quite a lot of research into coping strategies for people with Alopecia Areata. There is a range of resources and tools available on the website. I’m not a researcher or a psychologist, but for myself though, I think it comes down to three core fundamentals.
“Connection is why we’re here; it is what gives purpose and meaning to our lives.” – Brene Brown
Humans are a fundamentally social animal. As an introvert, this has been a difficult fact for me to come to terms with. But it holds up. Some studies have shown that loneliness can be as bad for our health and life expectancy as smoking.
As our countries try to prevent the spread of illness, many of us will be experiencing social distancing and isolation. But even before our current troubles, many of us live with disconnection. We live alone at unprecedented rates. We move house more often than we used to. More and more of us are working casual roles or gig economy jobs, without the stability of a workplace to connect to. Is it any wonder people feel isolated and lonely?
In the wake of the current pandemic, staying connected may be reliant on digital tools. Group chats, video calls, digital classrooms, and telemeetings will be replacing more traditional get-togethers for a while. These types of tools have always been a key resource for people with Alopecia Areata. Many of us don’t know others with this condition when we’re diagnosed and digital platforms are a key way to connect with our community. When this crisis is over, it’s important to remember how important these tools were and do what we can to support better connectivity and services for everyone’s benefit.
But connection isn’t just reaching out to or being around people. As Brene Brown, social researcher and writer, says, “I define connection as the energy that exists between people when they feel seen, heard, and valued; when they can give and receive without judgment; and when they derive sustenance and strength from the relationship.” Building a real and deep sense of connection can be difficult, and often involves sharing some of the more difficult and vulnerable parts of ourselves.
Being honest about our struggles can be really hard. That’s true of struggles like alopecia and how we’re feeling in times of uncertainty. If you’re like me, being open with difficult feelings can feel like giving in to them or being a burden. I’d rather out-perfectionist bad feelings, push them down and act like I’m all okay, so I can focus on other people.
But showing up and being our real selves is when true connection can grow. When we isolate ourselves from our feelings and others, we create disconnection. Showing up, sharing and being real are the only ways forward.
How to cultivate connection?
- Stay engaged as best as you can. Skype calls to family, synchronised Netflix sessions with friends, and checking up on those who are impacted by isolation are some important options.
- When possible and safe to do so, engage with your community. Whether it’s dinner with your extended family, attending an Alopecia Support Group event or joining a sporting or book club through your local council, there are lots of ways to build new connections and friendships. Remember this challenging time and think about how you contribute and connect in future.
- Look at your relationships and ask yourself how do you show up? How do you let yourself be seen? Are there areas you can work on?
- Watch or read Brene Brown.
The idea of “self-care” has become something of a catch-all so a “treat yo’ self” style justification for any kind of purchases or behaviour which feels good. There’s no denying the push from retailers and brands to cash in on the concept. “Buy our product – it’s self-care.” While bubble baths, sheet masks and a glass of wine might be nice (sometimes very, very nice), there are two key issues with this model of care – the focus on the self and the focus on short-term good feelings.
The best and most fulfilling care is often not really about ourselves. As discussed, humans are social animals. It’s undeniable, especially in the current situation, that our own health and happiness is supported by the health and happiness of the people and communities around us. We are interdependent. So caring for ourselves, often involves caring for others.
Activists have a counter term to the idea of “self-care” – Community Care. Community care is another form of activity and compassion which takes the focus off the individual. Communities may be family, local areas, sporting or religious groups, or the wider public as a whole. Community care can occur in numerous ways, from volunteering and organising, to small, compassionate acts between people.
Whether you’re checking in with a friend, isolating to reduce risks to others, buying local and supporting small businesses in your area, or organising and advocating for affected workers, now is the perfect time to practice community care.
The other important factor is that real care is often long term care. Taking care of your body, your finances, your family, or your mental health are never things that happen overnight. They all require long term commitment to the things that matter to you.
Many important parts of long-term care may actually be things that don’t feel that good in the moment. Doing some exercise when you could watch be watching Netflix? Sorting out your taxes when you could be watching Netflix? I know which I’d rather do at the time, but it would be short term relief without long term benefits. Making the difficult calls for your long term happiness and to live within your values will have a lot of benefits. In these troubled times, we all feel a sense of urgency and immediacy. Grounding your care practices and daily routines in your values and long term goals helps to keep your focus on what truly matters to you.
The exception to this rule is often around rest. In a “rise and grind” work hustle culture, pushing to work harder and longer may seem like the more caring choice, when in reality, overwork leads to lower productivity and burn out in the long term. Making time for rest and fun is essential to meeting your long term goals in a sustainable way.
How to cultivate care:
- Determine your values. Care looks different for different people, but it should always be grounded in what matters to you personally. Determining your personal values isn’t always straightforward, and can take a lot of reflection. A helpful starting place is to consider what you respect in people who admire. Another good tool is thinking about what things bother or frustrate you the most.
- Determine your priorities and goals. Care should be long term, so you need to know where you’re headed and what actions to help you get there.
- Consider how you can build practices which further your goals into your regular routines.
- Reflect on how you engage and support your community and how you make time for rest and enjoyment. How could you grow your values in these areas?
What actually is creativity, and do people really need a creative outlet?
I asked this question to about 20 people around the Christmas period. I received a lot of really different and fascinating answers. Some people felt creativity was art, music, dance and writing, while others pointed out that it’s very possible to do a painting or play a piece of music without bringing any real creativity to it. If dance is creative, is the macarena creativity? Is writing an instruction manual creative? Maybe not.
So creativity must be something else.. Unsurprisingly, opinions on whether creativity is a necessity depended on how it was defined.
After many of these conversations, here’s my take:
Creativity is taking something that could be ordinary and making it special. Often, this experience is supported by sharing it with others, but creativity can be pursued privately too. Creativity can exist in art or music or dance, but it can also be cooking, gardening, storytelling, play, conversation, coding, or any activity made special by your subjective experience. It’s the old school alchemy of creating gold out of something basic. It’s about creating meaning and meaningful experiences.
With this definition in mind, I think creativity is as vital and essential to human happiness and wellbeing as connection or care. Creating and sharing meaning is an innate human need, and we all can improve our lives by finding outlets and opportunities for creativity.
For me, it’s most often cooking. I love food. I love growing food, creating shared meals, and recreating restaurant favourites at home. It brings me real joy to make meals special, not just functional. I’ve recently taken up watercolour painting, and hoping to get back into music soon.
Creativity is something that’s easy to forget and overlook. When life is busy, hectic and stressful, it can feel too hard or too wasteful to put energy into creative endeavours. But this is when it can be the most important. Finding time to create meaning for yourself is extremely important. It ties to the principles of connections and care that we previously discussed. Creativity can be rest, play and self-work. It can be the vaccine against disconnection and burn out, especially in difficult times.
How to cultivate creativity:
- Look beyond what you might instinctively think of as “creative” pursuits. Focus instead on enjoyment, specialness and what feelings meaningful and impactful for you.
- Allocate time and energy. Creativity takes time and focus, both of which can feel in short supply. Try to plan enough time and take care of your physical and mental needs, including rest.
- Find inspiration. Creativity is everywhere, and you can always find people who do what you love and value. Instagram and social media can be a fantastic source of inspiration. I also love online art and cooking tutorials, and Felicia Day’s book “Embrace Your Weird.”
These are challenging and uncertain times. We will get through this, but we need to stay mindful, stay true to our values and to one another. To quoteJohn Green quoting Robert Frost:
“The only way out is through. And I believe that. I also believe that the only way through is together.”
This article is a personal reflection piece by AAAF volunteer Georgia.
For formal support resources and tools, please visit the AAAF website at https://aaaf.org.au.
If you or a loved one is struggling and requires immediate support, we recommend reaching out to Beyond Blue for talk or text chat support lines at https://www.beyondblue.org.au/ or 1300 22 4636