Invisible Illness

Those of us with invisible chronic illness...Anyone else feel more validated when you actually have a cold/flu? Symptoms are very apparent, measurable, and relatable with the rest of the healthy people. Fever, runny nose, sore throat, cough - like I don't feel like I have to make my case that I'm sick.

Is this a weird victory?
#InvisibleIllness #ChronicIllness

(This is a long post and I won't apologise for it)

This is not something that is talked about openly by many of us.

Well it might be mentioned in passing but then we drop the conversation as it makes us uncomfortable and can be misunderstood as whining/complaining.

It is something that needs to be talked about more often.

I'm talking about grief.

Not the kind you have from the loss of a loved one.

I'm talking the grief that comes from a chronic illness, injury or a disability.

This type of grief keeps coming back too. One week you will be ok and the next you try to do something that was easy and find you can't do it any longer. But you keep trying to do it because you knew that you could once so why not now? You get angry, annoyed at yourself cause now you need help or modifications.

Then you start bargaining with yourself. You tell yourself you will do it a different way or won't do it at all....but wind up doing it again anyway because it's hard to admit and let go of what you were once capable of. You push through the difficulties and suffer the consequences time and time again.

You recognise it. You know it's part of a process you've been through since the beginning of your illness or disability.....you know you have to go through it and you know it will dredge up all the inadequacies you thought you had dealt with previously. 10, 30, 100 times previously dealt with.

But you know you will go through it all over again.

It's not just the loss of the big things in your life that you grieve.

It's all the little day to day things that suck away at your self worth.

Not being able to stand to do the dishes anymore. Having to sit to shower. That making your bed means you need to lie down for a bit to recover from the effort.

Forgetting something in your car that means you have to walk out to get it but the pain it creates is through the roof and you wish you could just be normal again.

It's those little, every day things that get to you the most. Those things we all still try to do when we can and then try to smile our way through it even though we feel like we are dying inside.

We take pain relief to mask the pain as best we can just to get through certain tasks.

We downplay how bad we are feeling as we know it makes others uncomfortable. We know we can't change much of it either so we try our best to just carry on.

We carry a world of grief and loss on our shoulders and rarely do we share how much of an impact it has on us. It's mostly when we are at our worst we share what we are going through and even then we try to downplay it.

We smile and joke and keep on going as we know there are few alternatives and we know in order to survive we have to lie to ourselves and to those around us.

We learn to cope with things that would crush others if they had to live it for a day. We are forever grateful that others don't have to live it for even an hour as we know, we understand the burden all too well.

We see how others look at us. We feel the weight of judgement.

Many times it's the judgement of ourselves that is the hardest.

We mourn the loss of how life used to be for us. The loss of our work identity and the struggle to find importance in our existence. To help others understand that we are still important. That we still matter. We mourn the loss of our social lives. Our hobbies. Our love lives.

Those are the big losses. In some ways those are easy to cope with.

It's the loss of all the little things that can crop up daily that gets to us.

The floor being dirty and you don't have the energy or wherewithal to deal with it as you know the pain that comes with it.

The laundry pile that has just grown because you know folding it all will hurt like hell.

The little bits of rubbish that sit on your side table that you haven't gotten around to putting in the bin yet.

The layer of dust on your furniture that drives you insane but you know you cannot get it all done in one hit.

There's one thousand other little examples that others just take for granted, that we feel guilt over. Shame that we can't maintain the same standards we once could.

We spend time wrestling with ourselves and then we finally begin to forgive ourselves and accept the new normal we find ourselves in.

Then the damned process begins all over again the next time we struggle to do something that was once easier to do.

We go through all the stages of processing that grief once again.

Sometimes it's easier and others it's not.

To be constantly reminded of who we once were and what we could once do feels like a slap each and every time.

But we deal with it.

We deal with it because there is no other alternative.

Life keeps on going no matter how much we wish it would give us time to adjust.

We grieve. We also laugh a lot. We keep pushing through these difficulties in the hopes that it will get easier (it usually doesn't). We live our lives with deep compassion and empathy for others as we dislike seeing them suffer. We live with a deeper understanding of what makes us human. We have learnt how to express ourselves differently and to find meaning in our lives in different ways. We communicate differently too. We have had to learn how to have deeper connections to those we love that isn't just based on our work life. We see the world differently.

Some days are just a battle to exist within ourselves. Some days are better than others.

You never can tell by looking at someone what they might be experiencing.

We grieve our many losses yet we try to smile through them all as the alternative, and their consequences, are just too much to contemplate.

#ChronicPain #ChronicIllness #Disability #MentalHealth #InvisibleIllness