Why 2020 Is the Perfect Time to Talk about Your Arthritis
This year has been a challenging time for everyone. Heartbreaking for some and devastatingly life-changing for others. It's a time for reflection. To take stock and to make a positive change. In this article, I talk about how now is the time to tell your story.
Social distancing, lockdown, shielding - whatever your experience, governments across the world were forced to take measures not seen since the Second World War. It was a shock to the system wherever you were. Amongst all the chaos, fear and worry was a tiny glimmer of light, however.
How 2020 provides an opportunity for change
An opportunity for change as is often the case in the darkest of times. Every person, regardless of their health, age, social standing, or background experienced, in part, what it was like to live with a chronic health condition or disability such as arthritis.
I'm sure we've all experienced those days where we had plans, things we wanted to do, opportunities that we had to cancel because our health simply would not allow us to participate. It depresses me to think about how many chances I have missed due to my health - the 'what if's.
Being forced to cancel plans is one of the hardest parts of living with arthritis for me. Primarily because it doesn't just impact me but all those around me.
The parallels of lockdown and psoriatic arthritis
This year, lockdown and social distancing exposed everyone to that feeling of missed opportunities, loss of control; unfulfilled potential. That infuriating feeling of not being able to do what you want to. The parallels between lockdown and disability were clear. Still, unfortunately, only a minority of us were shouting from the top of our lungs trying to draw them, as the world's media became wrapped up in COVID and fear.
I can sit here now and say that writing and advocating about arthritis, and chronic illness is what got me through the last six months. Of which I spent five of the months under effective house arrest as part of the UK Government's 'Shielding' program. This was in place for the most vulnerable and high risk to COVID.
Thankful for the psoriatic community
It not only gave me focus and an outlet during a challenging time but the community around me that I never knew existed a year ago when I started this journey was a fantastic support bubble. Given the strain on my mental health 2020 has brought, I'm tempted to go as far as labeling them lifesavers.
I've always seen the value in talking to others who understand. Who have experienced our pain and disability over those of friends and family. It's not a slight against my loved ones; they will never understand. They want the Joel before arthritis or when I'm in remission - not the unwelcome guest by my side the majority of the time.
The time to talk
However, this year, I have been able to have conversations with loved ones that they either would have never entertained or grasped before, and I challenge you to do the same.
So when people talk about the extra hassle at the store, the inconvenience of facemasks, queuing systems, and such like, draw comparisons to what a simple shopping trip means for you regardless of the pandemic. The planning, the fatigue, the getting the pain meds 'just right' so that they are at maximum efficiency when you need them the most or how you can only carry two bags because of the pain in your hands.
Changing the perception by talking
Are they complaining about the limited access to doctors or dentists at the moment? Use it as an opportunity to talk about how you might have to wait months to see a consultant. Explain that you can't get into your GP that day and it might be the difference between sleeping that night for the first time all week or how lockdown meant you went months without your regular treatment.
I notice this one, in particular, has proved a good talking point when somebody complains about a sore tooth and the dentist currently being closed. Are they raising concerns about their mental health due to the stress of this year? Empathize, support and if you can, without taking the focus off their issues too much, explain how your chronic illness impacts your mental health, and you know how they are feeling.
Lean on the community
I recently experienced this same scenario with a loved one and it started a conversation in which they revealed they had no idea my chronic illness was so far-reaching. They thought it was 'just about the pain'. When I explained the days without sleep, the stress and worry about financial security, and my future, the routines I have to follow hours ahead of my working day just to clock in on time - their whole perception of arthritis changed.
If you don't feel confident enough to have these conversations with those closest to you (I know all too well they can be the hardest!), then talk to the community. Last year, I was in my 24th year of living with arthritis alone. Nobody understood. Nobody will unless they experience it. All I had was my thoughts and anxieties.
Talking can open doors
Now, I have a family of thousands around me, and I receive messages of support and well wishes each day. Some of these people know my 'bad days' better than I feel I do after almost a year of writing about them. Whether it's reaching out or asking someone else how they are doing, talk. It will not only help you manage your day to day with arthritis, but you'll probably unknowingly make somebody else's too.
In a year where I have really found out who my real friends are, I've unwittingly opened the door to a whole new world of supportive strangers. I hope for myself, as I wish for you, that somewhere out there, I was somebody's 'lifesaver' to repay the enormous debt I owe the arthritis community after this upsetting year.
Stay safe, stay positive, my friends.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?