The cost of invisible illness
Updated: Mar 13
Living everyday with an invisible condition is harder than any healthy person will ever realise. The cost of looking normal on the outside, while suffering on the inside is enormous. It doesn't matter how many times you tell a person what is going on, unless they truly live with you or your suffering, they will not be able to see it or believe it. They might feign sympathy in that moment but the next time you see them it will be completely forgotten. I have experienced this countless times in my life.
There are many different conditions with this unfortunate curse attached to them. My son and I both were born with an Anorectal Malformation (I will touch more on this in future posts) an invisible condition but with constant daily implications, I also suffer from pain caused by adhesions from numerous surgeries I've had and a form of inflammatory arthritis known as psoriatic arthritis. All of these leave no visible mark on me other then the scars hidden under my clothes. Walking down the street, no one suspects the pain I suffer on a daily basis. The pain I have learnt to mask from the world.
One of the many reasons I mask the pain is because it is so invisible. People struggle to believe what they cannot see, so sometimes it's easier to just hide it. Most people won't come out and directly call you a liar, but there are always the sideways looks and the comments of, "Oh, but you look so well!" And then, inevitably, they always seem to forget by the next time you see them, As though these chronic conditions will magically disappear and you're all better now, the cost of this is enormous.
My conditions, like most invisible illnesses, can be quite debilitating at times and severely limit what I am able to do and achieve. This can be hard in the workplace especially, you try to fit in and get as much done as anyone else, sometimes more, to hide your problems, but you burn out fast. Your body just can't handle doing the same amount as a fit, healthy, able bodied person could do. But how do you explain this to people when they have only ever seen you looking normal and healthy?
I'm not sure there is any advice I can give on coping with any of this. I have tried many tactics over the years. I've tried telling people over and over in the hopes they will see but they often get bored of hearing it and when that happens, it's pretty damaging to ones self esteem. I've tried pretending to everyone, even myself, that I'm normal and everything is fine, but this always leads to me not being able to meet peoples expectations and disappointing myself more than anything.
I may not have cracked the code on how to deal with this but I hope by raising awareness of invisible conditions like I have and my son has, we can help lift some of the pressure off of people and make it more ok to not be ok. This doesn't only apply to physical conditions that cause pain but also mental health conditions such as anxiety and depression which can be equally debilitating.
Hopefully those of us who have suffered in silence for so long and have faced the comment, "Oh, but you look so well!" when inside we felt the complete opposite, can stand together and support each other in educating the world on ways to support us, both physically and mentally. If we tell someone we have a problem, it is not ok for them to ignore it just because they cannot see it. It is not ok to use ignorance as an excuse for minimising another person's suffering.
The biggest lesson I have learnt from my own invisible suffering is to not judge a person on face value. If someone seems upset or in a bad mood but you can't obviously see why, don't judge them, there is probably a good reason for it, they aren't just being a jerk, and they don't have to explain it if they choose not to. They might be in physical pain and trying to hide it, they might have had some bad news, they might have lost someone or they might be seriously depressed. Whatever it is, don't judge them. I know if I am having a bad day I can be extremely defensive and I know people have looked at me sideways for it in the past, but if you've been awake all night from pain, you may not always be in the perfect mood the next day either.
I hope by writing this I can give at least one other person permission to not be ok and maybe educate another on how to help or at least not hurt. If you would like me to talk more about anything specific from this post, please leave a comment or send me a message and I will be happy to delve deeper into any realm you wish. And to all the people out there suffering in silence, I want you to know you're not alone. Your problems may be different to mine, but I understand at least a fraction of what you feel.