How I Approach Birthdays as Someone With a Rare Disease

July 14 is Bastille Day. It also happens to be my birthday.

I’m Australian, but I love all things French, so I quite like sharing my birthday with such an important national day of celebration and remembrance for France.

Bastille Day is the anniversary of the storming of the Bastille and the start of the French Revolution.

A bastillion is a fortress. The Bastille was a fortress used by French kings to imprison subjects who didn’t agree with them politically. It represented a place of oppression and captivity.

Bastille Day represents breaking free from such oppression.

As I think about living with a rare disease, I can so easily feel like I’m in prison. The restrictions placed on me physically can become a fortress, a bastillion.

Special occasions, especially birthdays, can escalate the feeling of being a prisoner in my own body, in my own home.

I could allow my own physical bastillion to spoil my birthday, or I could take a leaf out of the French book and take decisive action.

I decided this year I was going to break free from the bastillion created by pain and disability.

Anyone with severe disabilities and chronic illness could easily be excused from trying to celebrate a birthday.

Any activity, outside of a well-oiled routine, takes so much out of us. So much planning is often required to achieve anything out of the ordinary.

Why even bother, as even the best planned strategies can turn pear-shaped. A disease flare can destroy all hope of being able to move, let alone celebrate.

These are not excuses; they are realities.

However, these realities can cause us to be constantly trapped in our very own chronic illness bastillion.

No one wants to be in prison. Certainly not someone living with chronic illness. Life is hard enough as it is.

So how can we break free, especially when we want to celebrate a birthday with friends and loved ones?

I’m hoping I can help a little by leading a chronic illness birthday revolution!

Let’s start with a few basic facts:

• A birthday is just once a year.
• It’s important because you were born and your life is worth celebrating.
• It can be a simple occasion; it can even be a quiet day.
• You can and should set the agenda — it’s your day after all.

So what happens if you are not well on the day?

Quite likely that will happen, so here’s how I approach my birthday:

• I have a birthday month. Once July 1 hits, I take the opportunity to do special things, if possible. They range from coffee and cake out with my husband or an hour or two out in the country. Morning or afternoon tea with special friends is planned on a day other than my actual birthday. The dates are always flexible, as my friends know I may need to reschedule on short notice.
• I buy a few little birthday gifts for myself online throughout the month. Little treats that bring joy, but don’t burst the budget. As they arrive in the mail, each parcel offers some birthday pleasure and excitement.
• I limit medical appointments during my birthday month. I want to focus on life and nice things. If I’m not critically ill, I can deal with health issues next month. It’s like having a holiday, and it’s a wonderful birthday gift.
• I don’t plan anything specific for my actual birthday. My husband always has presents, a birthday cake and often a surprise, like pretty balloons to spoil me. There are lovely phone calls, texts and messages from family and friends to also make the day feel extra special.
• No plans on the day makes it so much more relaxing. The stress of worrying about disappointing others because you have to cancel plans is completely removed. You feel so free. Nothing bastillion or prison-like about the day at all.
• If you happen to wake up on your actual birthday and find you are having a good day — make the most of it. Ad hock plans can be so much fun. Just make sure you have a rest day planned the next day and probably the day after. That way you can push the boundaries on your birthday, if you feel you can and want to.

Given our diseases work hard at making us prisoners in our own bodies, it’s vitally important we don’t add to those prison bars. Setting unrealistic goals and making definite plans for the day will likely end in disappointment and tears. It’s supposed to be a happy day. We need to do our best not to sabotage it. We owe it to ourselves, not anyone else.

Breaking free from a birthday bastillion, from unrealistic expectations, will definitely ensure we have a better chance of the day resulting in a “Happy Birthday.”

Being brave to do things differently, on terms that work for you… that’s the revolution.

It takes a change of mindset, and if you are used to big birthday celebrations, letting others know well in advance how you need and intend to spend your special day is important.

The earlier friends and loved ones know you are implementing a new way of celebrating your birthday, the better opportunity they have to adjust their thinking and accept the changes you’re making.

You are finding ways to live as well as possible with your rare disease, and you can be proud of yourself for taking decisive action.

So if you are celebrating a birthday soon, please make sure you celebrate as best you can throughout the month — don’t try to make it one big happy day.

The last thing you need is undue pressure when your body places so many restrictions on you each and every day.

I hope you feel as good as possible on your special day, but if you’re stuck in bed or just not moving far from your lounge chair, remember it’s just one day and you can have a treat the next day or the day after. You have a whole month of opportunities.

Maybe one of your little online shopping treats might arrive on the actual day!

I like to indulge in a croissant on my birthday, as a nod to my love of all things French and as a symbol of my resolve to break free from a birthday bastillion.

Maybe you could find something to indulge with, which reminds you of your resolve to take control and celebrate your birthday in a revolutionary way.