Today, I am writing a blog post that I’ve wanted to write for years but couldn’t. Now that my health has fortunately improved— I feel okay writing about certain topics that felt too close or too upsetting before.
The topic for this post is looking well when chronically ill. I am sure you can relate and I welcome your thoughts in the comments, which you’ll find at the bottom of the page.
How Society Views Illness
My life was turned upside down a few years ago when I became severely unwell. Overnight, I found myself unable to return to work and relying on the care of my husband and parents.
Sadly, there are millions of others who have found themselves in the same situation.
Over the years, I’ve come to learn that most of society holds a very black-and-white view of illness.
You are either sick and getting better or you are sick and getting worse. There’s no middle ground.
The Middle Ground & Prejudices
Where one good day– or even a few good days– doesn’t always equate to getting better.
Which leads to prejudices.
If you are well enough to go for a cup of coffee, surely you should be able to do some form of work?
If you are seen to be out and looking well, it can’t really be all that bad?
There is a meme doing the rounds that sums up the prejudices chronically ill people face perfectly. And, it reveals why so many of us feel unnecessary guilt and anxiety.
Stay sick and you aren’t trying hard enough,
Make improvement and you were faking all along,
Share your reality and you are attention seeking,
Keep the struggle to yourself and you aren’t really sick.
-Unknown (if you know the original source please contact me)
You Don’t See The Difficult Parts
The truth is that most people aren’t privy to the daily struggle. Unless you are very close to someone who is chronically ill, you will only see a fraction of their lives.
That fraction, naturally, tends to be on the better days. Else, they likely wouldn’t be seeing you.
During those better days, no-one wants to focus on the symptoms they are still experiencing. (Yes, they will still be experiencing symptoms despite how they look!).
I know I didn’t. I was getting a reprieve and I would want to make the most of it.
I wouldn’t mention how I was feeling unless I was asked. Even then, I’d often downplay it because I didn’t want to feel like a fun sponge.
Instead, I’d choose to enjoy myself and I’d look good while doing so! No-one would know by looking at me that I was sick.
The Guilt That Comes With Having Fun
But, with that fun and enjoyment comes guilt. Guilt that would inevitably creep in because of self-doubt.
You see, chronic illness is a cruel beast. There’s often no rhyme or reason for those “better” days.
Every single time I was fortunate to experience one of those better days, those reprieves, I’d question myself.
Especially when they lined up with needing to do something fun, such as celebrating a friend’s birthday.
Maybe I just needed to do more? Was I making myself sicker by resting in bed?
Sometimes external pressures over what others must think would add to this guilt. When you are aware of the prejudices that exist, it is hard not to feel affected by them.
The Dangers Of Thinking THat We Need To Do More
Yet, each time I slipped into this mentality and pushed myself to do more I’d be in for a shock. I’d pretend I was fine for a day and just like everyone else.
And, that’s as long as it would last. A day.
For the next few days I’d be confined to my bed, suffering in a way I wouldn’t wish upon anyone. There is nothing crueller than feeling like you are being punished for trying to live and function like everyone else.
I could never understand why my body would allow me to push hard and be so reckless when this was the outcome.
This subsequent suffering is the part no-one sees.
Why We Push OUrselves When It Hurts OUr Health
Despite this cruelty, I’d do it again, though. Because sometimes my desire to do something outweighed the payback.
Sometimes, I’d get angry about my situation and push myself out of rebellion.
Either way, the alternative would be to shut myself away and do nothing. Which would have been pointless because I wouldn’t feel better from doing so.
If I didn’t have days where I pushed myself to have fun, to do the normal, every day things I wanted to do despite the repercussions I’d inevitably experience…
Well, that wouldn’t be living would it?
We Learn to Adapt & Live As Well As Possible
People with chronic illness don’t choose to be ill but they can choose to learn to adapt and make their way through life as best as they can.
It takes a lot of strength and determination to “look well”. It doesn’t come without its difficulties.
Fibromyalgia, chronic Lyme and M.E etc. are called invisible illnesses for a reason. It means they can be hidden and you don’t necessarily see the symptoms.
However, that doesn’t mean they aren’t there just because you can’t see the signs. Symptoms are always present.
Making An Effort Isn’t Necessarily A Sign of Doing Better
Going to the effort of putting on make-up isn’t necessarily a sign of doing better. It can be for self-confidence to hide the dark circles and dull, pale skin.
That gorgeous, floaty dress that makes someone look so well put together? It could be because it’s the only thing they can tolerate touching their skin as waistbands are far too painful.
AppearaNCES aREN’T eVERYTHING
It’s a ridiculous pre-conception that having a chronic illlness means someone should look like they are ill and suffering.
That if someone laughs or smiles it must mean they are feeling better. Since you clearly can’t be ill and retain a sense of humour (note the sarcasm).
Just because someone made it out for half-an-hour doesn’t mean they are capable of doing so on a regular basis.
It probably took days of rest to prepare for that outing and many days in bed following it.
lET gO oF jUDGEMENT
Instead of judging someone for looking well when chronically ill, maybe appreaciate the difficulties and obstacles they are overcoming to be present.
Empathise with the fact it doesn’t come without payback and that they are likely to feel incredibly unwell afterwards.
Don’t ask if they are ready to go back to work just because they can sit for an hour and drink a cup of tea.
Don’t make any presumptions at all.
Realise that it can make a huge difference to someone’s day to simply know that you understand what they are going through without judgement.
Listen to, believe and respect what someone has to say.
And, appreciate that, until you have lived through it yourself, you will never truly know what it is like to live with chronic illness.
- Living Versus Surviving With Fibromyalgia
- 5 Easy Ways to Practise Self-Care When You Are Chronically Ill
- Are You Trying Too Hard To Get Better?
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