For me, the hardest part of dealing with chronic illness has and will always be other people. Silly, right? It’s not the pain or the sleepless nights. It’s not the constant hospital trips and treatments. It’s not the sickness and sadness that the life you thought you had, you have now lost.
All of those things are heartbreaking and challenging, but fluctuate from day to day. Dealing with the general public doesn’t go away. Ever.
Even when at my very strongest mentally, I tiptoe carefully around new people or in public places. I’ve experienced firsthand on a number of occasions just how cruel and intimidating people can be, when they feel they have the right to challenge my disability. There are of course an army of kind, considerate people that way outnumber those who are hostile, but that fear doesn’t ever quite go away.
Look at me. I’m 38, a mother of four. Of athletic build. I don’t often wear makeup, do my hair or think beyond comfort when dressing. But I look normal, right? Just your average middle-aged woman.
It’s no wonder people look baffled when I try to explain to them what’s going on inside my body; this huge battle whereby my cells fight each other and organs become compromised in the process. I look “normal.”
You can’t see my joints eating themselves.
You can’t see the muscle spasms shooting down my legs and arms.
You can’t see my kidney struggling to filter my blood.
You can’t see my heart’s third chamber cramping as it pumps life through my body.
You can’t see my brain pulsating as it struggles to cope with the swelling at the top of my spine.
You can’t see my gut attacking itself.
You can’t see my lung lining puffed up and squished against my rib cage.
You can’t see any of it, but it’s there.
Like day and night, while my smile beams, the pain and darkness are hidden, but never stop existing.
For every event I attend, there is a plethora of extra drugs and pain; normal life that’s so finely balanced becomes impossible in the days after. I will come to your wedding and party with the best of them ( who doesn’t love a good wedding) but unlike most of the guests, I won’t be able to walk without pain for days after. I’ll need help to get undressed at the end of the night and for the next few mornings. I won’t be able to do the washing or washing up for the next week. Getting in and out of the car will leave me in tears. We will eat food that the children can cook themselves.
That’s what you don’t see. That’s the bit that all but those who live with chronic illness will never see.
The payoff.
The tough bit.
I think it’s because we keep this part of our lives predominantly private and personal that people find it so hard to accept and understand the reality of living this way. It’s why when I get out of the car on a good day, walk normally into a shop or go to the beach for a walk, I feel ashamed. I feel a fraud. I feel judged.
I live my life expecting that letter telling me I’m not sick enough, that I don’t look ill enough to get the support that I do.
The bad bits, the pain, the struggles, all that stuff goes on privately.
When you are really sick, do you leave the house? When you are in pain and ill, do you plaster that all over your Facebook page? Do you update your social media with every symptom and bad thing you feel, post only pictures of you crying and hurting?
Of course you don’t. Most people don’t. They project positivity, show only the good bits, and that’s better, right?
I made a choice some time ago, to live with joy in my heart. To no longer feel ashamed and hide away. To begin to live to my fullest potential. To treasure the positive, incredible things that I do have. To push myself as far as I could and to achieve as much as possible.
