Tag: love

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.

Living confidently in the minorty

Living confidently in the minorty

I have never been popular but at the time of my original diagnosis, I had a lot of friends who were constantly checking in on me and ensuring I wasn’t feeling left out. As time has gone by and I have spent more time at home in bed, I have also spent more time alone and when I do go out, I find it really hard to make conversation and ‘fit in’ with those around me. This is definitely not solely the fault of those around me as I am not great at making conversation because once I get asked ‘what I do, where I live or what I do in my free time, instead of saying something like ‘I am doing my dream job as a result of working hard in my degree, I live alone in a lovely house in the city near to where I work with my partner and in my free time, I love to go on long walks with my dog, meet up with friends for drinks after work and spend the weekends road-tripping and having short breaks away’. The reality of chronic illness, is that is just not possible right now, so I lack the conversation points and the conversation dies.

I am off to a leadership summit this week which I am really excited about BUT, I am also terrified as there are so many unknowns (see my post about spending time with new friends and the unknowns connected to that here) and I already know that I won’t be the typical person in attendance there.

Before we even address the chronic illness aspect of my life, I am a women (minority in church leadership), I am 26 years old (yet look about 18) and I am there to represent YouBelong, and online church (not exactly the norm!). Then we get to chronic illness. I am easily fatigued and need to nap, always in pain so require medication to get through the day, and I will be using my wheelchair, pushed around by my Mum who is there as my driver and carer for the trip. I am not normal. I won’t naturally fit in.

The bible (as always) has something to speak into this situation. In Matthew 15:21-28, we read about the Canaanite woman who came to Jesus seeking help for her possessed daughter and in Mark 5:25-29, we read about the woman who was healed from 12 years of bleeding by touching Jesus’ clothes. Each of the people mentioned here would have been marginalised. One because she and her daughter would have been viewed as evil as the daughter had a demon inside her and the other because she would have been viewed as dirty according to the culture and laws of the time.

The woman who bled didn’t feel that she could approach Jesus straight up and ask for healing like others which is why she instead took a hold of his clothes from within a bustling crowd of people. She planned to go unnoticed but having heard of Jesus power, knew it too good an opportunity to miss not being healed so she stepped out of the cultural norm and went out to Jesus and she was rewarded for it. Jesus loved her and cared about her and healed her. He didn’t react with disgust at her story but instead showered her with love.

In the other passage, we discover that the mother of the woman possessed by demons came running to Jesus and his friends begging them for help. Before Jesus could even speak to her, the disciples told her to go away because she was shouting and screaming and ‘making a scene’. They didn’t want her bothering them with her issues but Jesus told them to be quiet and knowing the faith of this marginalised woman, healed her daughter of the demons.

Now, this post is not about faith or healing at all but what these examples do show is that even when we feel marginalised, left out, unimportant, in God’s eyes we are special and loved just like every single one of His children. Different doesn’t mean bad or wrong or less talented or important. We are all loved and God has a plan for each and every one of us.

When I go off to the summit this week, I will not go in with my head hanging low, trying to hide like the woman who bled, trying to go unnoticed. No, instead I will go in with my head held high, perhaps standing out but also standing up for what I believe and what God has called me to do even if that means others laugh or don’t see the significance because I know God loves me and my uniqueness and that in Heaven, no one will be marginalised and isn’t really the world that we ultimately want to be a part of? Until then, we just need to work at making our piece of earth as much like that as possible by accepting everyone as they are and recognising their differences as God planned and purposed and ensuring everyone has a place at the table now as well as in Heaven.

Facing shame and guilt due to chronic illness

Facing shame and guilt due to chronic illness

In her book, ‘Illness as Metaphor’, Susan Sontag explains that within many cultures, illness is believed to be the result of something a person has or hasn’t done. Perhaps you’re ill because you ate too much bacon, drank too much wine, did too little or too much exercise, didn’t get enough sleep, put yourself into too many stressful situations, dwelt on a situation too long or even sinned (did something wrong in God’s eyes) etc. etc. 

I know my health problems are not my fault, in fact we are pretty sure that it is likely the result of my genes, but sometimes I still wonder if I should have exercised more or eaten healthier or done more meditation even though I know this is unlikely to make any difference at all. When I think about what I could or should have done differently, I feel guilty as if I could have changed the past, I wouldn’t be suffering but nor would I be making life harder for those around me. 

My parents suffered when I couldn’t eat and was very weak and when I experience high levels of pain because there is nothing they can do to help me. They suffer financially because I cannot work enough hours to earn enough money to sustain myself so are looking after me at home too. There relationship may even suffer because I take up their time and energy so they have less left for each other. I am almost certain they would not want me to think like that but I feel guilty for what I have taken from my family and those around me who I care most about. 

Another avenue that produces shame and guilt is being vulnerable and honest. When I am vulnerable and honest with people, I will tell them when I am in too much pain to continue walking or too tired to stay up and socialise or that I need to have something different on the menu due to dietary requirements or I need to have extra cushions on my bed, a downstairs room in a hotel to reduce energy usage. In real life, it means saying no to baby-sitting because I am too tired or in too much pain to help out despite having done nothing else all day, leaving someone who has done 8 hours work, cleaned and tidied, walked the dogs and already baby-sat yesterday to do it again today. That leaves me feeling very guilty but there is nothing I can do. My body is out of my control. 

Shame is the result of societal norms being broken. If the shame came as a result of wearing bright pink clothes to work in an office where everyone else wears suits, the person may be embarrassed but they can wear a suit to work the next day and the shame will slowly disappear. When the shame happens as the result of something beyond our control, the only we can do is hide it the best we can. For me, that looks like not using the wheelchair when out in public, eating foods that my friends eat even if they hurt so as to not appear ‘fussy’ and provoke questions and doing all I can to keep up with those around me and then going up to my room to sleep and take medications or cry until the pain subsides or I fall asleep. 

As a Christian, I fear shame every time I open up to someone new about my health issues because society says illness is our fault (see above) and many Christians often say that if you are not ‘healed’ it is because you don’t have enough faith/ don’t pray enough. When I have done all I can and prayed everyday for many years, had prayer evenings dedicated to my healing, this not only leaves me feeling upset and frustrated but shamed because I can’t do anything to change those people’s views of me and my condition. 

However, we know that God does not want us to experience guilt and shame. They are not heavenly emotions and do not belong in God’s people. Often, guilt and shame are our own fault in which case, the bible tells us we need to ask for forgiveness but this is different because chronic illness and disability are not our own fault (generally). Even the disciples, who were only out to do good by sharing the good news of Jesus with those around them, experienced shame but instead of letting it overwhelm them, they turned it on it’s head -“rejoicing that they were counted worthy to suffer shame for His name” (Acts 5:41). It might not seem like it, but we can use the shame we feel for having disabilities or chronic illnesses and use them for good by using them for His name and glory and for the extending of His Kingdom.

It is likely this will not keep the guilt and shame away completely but we can ask God to protect us and block the unfair attacks that are aimed at us. When we pray, He listens, and He will work in our guilt and shame and stop the devil/ accuser from hurting us through his lies. Overall, we must remember that even when we feel guilty because others are making us feel that way, God is not saying that to us. He loves us and cares for us and has not given up on you.