Tag: bad day

Looking ‘normal’ doesn’t mean we are.

Looking ‘normal’ doesn’t mean we are.

A large quantity of the people connected with YouBelong have a disability or chronic illness. For some of us, our conditions have little to no impact on our day to day activities and lives in general. For others, our lives are greatly impacted by our conditions as the world we live in is not well suited to our situations. Then there is another group who sit somewhere in the middle. Some days we can cope just fine and look and act like anyone else but on other days we are home or even bed bound, unable to to do anything for ourselves and truggle constantly to control our symptoms with medications and therapies. I fit into this circle in the venn diagram of chronic illnesses – the one that overlaps the ‘no effect on daily life’ and the one that says ‘unable to participate in daily life’.

As I was born without health issues, I have had to adapt to the changes that have taken place in my life as a result of chronic illness…. but so have those around me. Although I work, I can only do so part time and even then, I can only do that because my parents drive me to and from work and allow me to live in their house as I cannot work enough hours to afford to live in my own place. Even if I could, some days I am unable to get up until muchh later in the day which means I do not drink anything or eat anything without my parents bringing me things and helping me out with the cleaning and general household jobs.

As I said, I am in the middle circle of the venn diagram so sometimes I am doing okay and my symptoms are under control and other days I am really unwell. A lot of the people in the chronic illness community describe these as good days and bad days and we all know what that means. A good day does NOT mean symptoms free. If we suffer from pain, we probably still have pain in our bodies, even on bad days. If we struggle with fatigue, a good day might mean we can do more than usual, or not need to nap or rest as often, but we will still be tired and if we do too much, we can suddenly find ourself going from a good day to a bad day in a matter of hours. A GOOD day does not mean we are better, healed, cured. It means we are doing better than our average and may want to do more, to make the most of our good day but please take note, a good day to us, is not same as a good or even regular health day for the average person. If we decide to use our good days to do more than you would normally see us do or do things we would not normally do, don’t give us judgemental looks or doubt our conditions. If we do something we don’t normally do, it is probably because we want to do it, even though we know that tomorrow will likely be a bad pain day or a day with high levels of fatigue and are unable to get out of bed at all.

A good day may also mean we look ‘normal’ because we are up and dressed and may have our hair, make up and nails done or have our facial hair trimmed and neat. If that is how we choose to use our time and energy on our better days, why shouldn’t we be allowed to do that? Even on our worst days, many people don’t see how sick we are or feel because the illnesses are not visible. Pain is invisible, fatigue cannot be viewed apart from the bags under our eyes and the constant yawns that stretch across our faces but other people get ‘tired’ too and although this is nothing like that, it is indistingushable from the outside.

We as humans, are naturally judgemental and its often for a good reason. If we weren’t good at judging, less people would have survived the cave man days man days as they wouldn’t have known whether another person was going be friendly, or try to steal from them, attack other tribe members or even had fallen in love and wanted to start a family with them! But today, judgement leads to lots of problems, particularly with the introduction of the internet and social media where people can, and do, say what they think about someone they have never met simply because they don’t like the way they dressed or their accent or perhaps they are actually jealous of them so attack them for that reason.

Chronically ill people are constantly judged for how many medications we take, being absent from work or school so often without ever looking ill, being turned away from hosptials because our pain cannot be seen so is not accepted as real and being questioned about using a disabled parking space because we walked ‘just fine’ when we left the car and went into the shops!

When we receive all this hate and judgement from the world, the last thing we want or need from our friends and family is the same speel all over again. In James 4 we read these verses:

11 Brothers and sisters, do not slander one another. Anyone who speaks against a brother or sister or judges them speaks against the law and judges it. When you judge the law, you are not keeping it, but sitting in judgment on it. 12 There is only one Lawgiver and Judge, the one who is able to save and destroy. But you—who are you to judge your neighbor?

THERE IS ONLY ONE JUDGE…. BUT YOU – WHO ARE YOU TO JUDGE YOUR NEIGHBOUR? God is the judge, not us. If your reasoning for judging someone is because you don’t believe their pain or fatigue etc. can be as bad as they make out (I can guarantee it probably is – we have just gotten really good at hiding it!), it is not your right to judge. God will do that. You are told to love them no matter what. In Luke 6 we are told to love even our neighbours. It is hard but if we can work to do that, we can also work to really love our friends and family who have good days for love cannot be true with judgement incorporated into it.

A good day is just that – a good day. Tomorrow may not be a good day, or maybe it will be. Perhaps there will even be a good week but no matter what, unless we say that we are recoverd, cured, fully better, please don’t judge us for not acting or behaving in the way you want or expect us to.