G’day, friends, and welcome to another week and another post.
My good friend Chris, who took over the blog a couple of months ago, which you can read here https://livingabled.com.au/living-duchenne-meet-chris-gillin-a-living-abled-takeover/, posted a little while back about his experiences where he had to make sacrifices because of his disability.
Have I been sitting on this post for a while? You bet!
When you go through the oh-so-fun journey of being diagnosed with a condition, there are some things you won’t know until you need to. And to be honest, that isn’t always a bad thing! If you were handed a manual of what you need to know, organise, plan, or buy, the feeling of being overwhelmed would be through the roof!
One thing you aren’t told and figure out as you go along is the concept of sacrifice.
No, I am not talking about the Army’s definition of sacrifice, but it is close. The definition I am talking about is when you have to decide what is best for you to keep you safe, which sometimes means sacrificing a fun night out, gatherings, or anything you desperately want to do that is fun! Whether that be because it is too physically demanding and takes too much of a toll, or because of your health.
There will be times when you must put your health and well-being above everything and everyone else.
That is a very heavy burden to carry.

I have had times in the past where I have had to make sacrifices based on the fact that I physically couldn’t do something or primarily for the fact that I didn’t feel comfortable or safe based on my health.
However, I chose not to view it as a sacrifice but as more about finding the joys and good things in whatever I do, including when I sat and watched everyone else do things.
For example, when my family and I went on a cruise a couple of years ago, my brother, cousins, and aunt did an activity package full of high ropes, flying foxes, and abseiling. I, for obvious reasons, couldn’t participate in that. However, I didn’t consider it a sacrifice to sit out. I enjoyed watching them have an absolute blast, especially my brother, who knows sacrifice and even compromise almost as well as I do.
Sacrifice in the land of disability isn’t just for those of us who are diagnosed with a disability. It is also a part of those of us who are in our circle. My family have had to consider accessibility and inclusivity in everything we do. There have been places they wanted to go to but couldn’t because it wasn’t accessible or times when they had to give up sleep, comfort, days off work, days off school.
The number of times my brother had to take a day off school as I had a doctor’s appointment in Brisbane and couldn’t do activities on holidays as we couldn’t figure out a way for all of us to do it as a family when we were growing up.
Sacrifice is part of the territory when it comes to disability life.
It is part of deciding where to go for dinner, a drink, a holiday, or sporting events. Many people have had to sacrifice and compromise their favourite venues because they weren’t accessible.
I have had times when accessibility was a struggle, and I ended up telling my family to go and have fun, and I would go do something else or stay home because I wanted them to have fun! I usually twist their arm because they refuse to go without me, which is lovely, but I still want them to go to the places and do the things they love, too!
However, the biggest sticking point regarding compromise and sacrifice is when health comes above all else. Especially when contracting any respiratory virus could end up killing you. You have no other choice but to put health above everything.
There have been times when I couldn’t attend things because it was too risky from a health standpoint, whether that be because someone attending was ill or because it was too dangerous for me to be somewhere where illness could be present. It is very much a matter of Risk v Reward.
I had to take almost an entire term off school due to a swine flu outbreak and had to have tutoring, as the risk to my health attending school was too great.
Having to sit on the sidelines because of your health and what illness can do to you is a side to disability life that everyone hates.
Deciding to put your health first and not attending something is always challenging. Many of us can’t make that call because we don’t want to upset or offend anyone. So, the sacrifice becomes our health; we, essentially, gamble with our health being the chips.

Don’t get me wrong; keeping people happy and trying hard not to offend people is never wrong, but sometimes, you must put other things first. For me, health and safety are two of them.
The one time I don’t do that and go somewhere for the sake of not upsetting people could be the time I do pick up a bug, and it lands me in a hospital or worse. I know people wouldn’t be able to live with themselves if something did happen because I chose to keep them happy.
Not everyone will understand when I have to make that call to stay at home rather than attend that function, dinner or even classes. And that is okay; they don’t live the life I do, and to be honest, I hope they never do because having to sit out and not be a part of something because your health has to be a priority is never easy, especially when you know not everyone will understand.
Even though it isn’t easy because our good pal FOMO kicks into high gear, planning something fun at home that is just as enjoyable is sometimes required to get through those not-so-easy moments. Living life, even with having to put health first, doesn’t mean you are destined for a life of solitude or that it is not fun, because there are so many things that you can still do, and it’s all about risk versus reward.
However, it is important to remember that putting your health first is never selfish. It is self-sacrifice to allow others to enjoy themselves and ensure they never feel guilty if something ever happens to them.
I know I will keep putting my health first and continuing to find joy in the sacrifice. For me, when those times come, it’s enjoying a cheese platter, a couple of drinks, a book, a movie, and being in track pants and a hoodie at home with my family!
Till next week,
Rhi
Thanks Rhi, highlighting sacrifices not just for the person with a disability but the family as well.
There are certainly activities we have avoided because it’s just too much and takes so much emotional energy and time to assist that you can’t relax and enjoy it fully.
As always a honest reflection but showing meaning and still being accountable to yourself.
Thanks Rhi
Thank you for bringing awareness to those of us that never have to think about sacrifice this way.