Elhers Danlos Syndrome, suffering, my faith and me!

I recently posted a video on my Youtube channel UnexpectedSongbird about my faith, my disease and the relationship between the two and I was surprised by the response. I don't know why but I guess I thought it would be a video that not many people commented on but I was taken aback about how many people wrote about their own faith and their diseases or their lives because let's face it, we all face our own trials whether that's pain, disability, divorce, mental health, being gay, or whatever it is.

I have been a Christian my whole life. Growing up my Dad was actually a vicar so I was just always around people of faith. Like I say I have been a Christian my whole life however I have not acted like a Christian my whole life! They are 2 very different things and I must admit even now it's not always easy acting like a Christian when you're in so much pain you feel like you would do almost anything to make it stop! I am constantly learning though and one of the things I am really praying for at the moment is learning to be grateful because it is in my suffering that I need God most. It is on those days I pray more, I listen to sermon's more and I listen to worship music more. Everyday I wake up and I am in pain, most days these days extreme pain but boy do I need Jesus and my pain reminds me of that!

There is a song I adore by Erica Campbell called "Little more Jesus" and one of the versus' goes like this "I got too mad and I said too much, Went too far and I almost cussed, No my Mama didn't raise me that way, Lord I need a little help today, I went too sad and I'm crying too long, I can't keep sin everything is wrong, Yes my life seems way too hard but ain't nothing too hard for God" and then goes into the chorus which is "I need a little more Jesus" repeated... I LOVE IT! Oh if that doesn't sum up my relationship with this disease and my relationship with my God and Jesus then I don't know what does! I do need a little more Jesus, quite frankly I can't get enough! It's when I pause and reflect that I am able to put a smile on my face and think "Wow, that really is a blessing because I don't just need God in my life I NEED God in my life!"


I can turn to God in the morning or at night, any time actually and pray "Oh Lord you know what, I just can't do Elhers Danlos Syndrome right now, I can't, I am done but Lord, YOU can do EDS for me so here you go I am handing this over to you because I can't carry this burden right now"

Does it instantly take away my pain and make me feel well no but it takes away the BURDEN, it takes away the 'what ifs' of tomorrow, it takes away the 'this was not part of my life plan' feelings, it takes away the heaviness in my heart about all the guilt of the things I can't do with my daughter and the fact that we couldn't provide her with a sibling. Like I say it takes away the burden.

My Bible to me is the rod holding me up that I can lean on when things feel at their heaviest and no matter how heavy it never bends.

It's like being spoon fed little mouthfuls of emotional healing, that healing that is so much deeper then a physical healing. I know this body will not follow me into eternity, this body is temporary, this body is only for a little while and why do I know that? It tells me so in the Bible! 2 Corinthians Chapter 5 verse 1 "We know that our body-the tent we live in here on earth- will be destroyed. But when that happens God will have a house for us" further in the text verse 4 "While we live in this body, we have burdens and we groan. We do not want to be naked, but we want to be clothed with our heavenly home. Then this body that dies will be fully covered with life. This is what God made for us, and he has given us the Spirit to be a guarantee for new life. So we will have courage" Oh yes Lord I will have courage! I will have courage because this is not for eternity. Another great quote, one of my favourite, a promise "I will bring back your health and heal your injuries says the Lord" Jeremiah 30 V 17

Now when I first read that I took it to my heart and thought it meant I was going to receive full physical healing and now, with what I say next do not get it twisted I do believe God heals physically however in my own journey it has been about a deeper healing, God healing my spirit in living with this disease and I realised that maybe that is my promise for when I reach heaven when I reach my eternal 'body', he will heal my health and my injuries.

I have received some physical healing but not perhaps in the most obvious ways! I live with a ileostomy stoma bag and I am peg fed which means I am fed a fluid food over 10hours (any more then 50mls an hour and I am sick) directly into my stomach and to me those have healed me of the most horrendous symptoms I was living with before. Sometimes healing comes in the form of knowledge given to doctors so they can preform these incredible operations that give us an alternative way to live.

There are days when the suffering is so extreme I have to face each minute at a time, even an hour feels too much but again I find so much strength in my Bible and I want to share a few more Bible quotes with you in the hope that someone will relate to them and find some strength in them.

When I am living those minute to minute days this is what I repeat in my head (in fact I have it on a necklace that I wear everyday) "I can do all things through Christ who strengthens me" over and over I will declare this because I know what the devil wants me to believe and I must admit it would be much easier to say! "I can't do this" because as soon as that that thought comes in it is swiftly followed by a pang of anxiety which snowballs into panic. Here's the thing "I can't do this" is not a truth "I can do all things through Christ who strengthens me" is a truth and even though you may not believe it at the time you keep declaring that truth and I guarantee you it will reduce your heart rate, reduce your stress and reduce your anxiety which will reduce your pain because trust me the very worse thing for pain I have learned is to tense up!

Perhaps the biggest lesson I have learned along the road living with chronic illness, disability and pain is that what I need in my life is truth! 3 John verse 4 written from an Elder to Gaius says "Nothing gives me greater joy than to hear that my children are following the way of truth" and we need to imagine God is writing that to us. Are we going to embed ourselves in the truth or listen to the devil and what he tells us?

I think one of the most beautiful passages in the Bible that tells me that God doesn't love me despite my EDS he loves me because of my EDS is a passage that can be found in Matthew 11 verse 28-end when Jesus addressed people and said "Come to me, all of you who are tired and have heavy loads, and I will give you rest. Accept my teachings and learn from me, because I am gentle in spirit and you will find rest for your lives. The teaching I ask you to accept is easy; the load I give you to carry is light". That's it quite literally in black and white, having faith isn't hard, believing in God isn't hard. We make it hard when we want to over think it and pick it apart but if we accept and believe in our hearts what it says in the Bible then it really isn't hard. When you're suffering everyday totally understandably you tend to go down the "Why is God doing this to me" road, it is a road I have been down many times myself but the conclusion I have come to personally is, God isn't doing this to me but he is giving me the tools to live with it.

  Living with EDS yeah, that's hard but I get so much strength from my faith it is better then any tablet or painkiller I have ever been given from the doctor. I know to be well spiritually I need to go to church, I need to be around other Christians, I need to be prayed for and prayed over, I need to watch sermons and I need to listen to worship music and when I say "I need" I mean "I NEED" not 'could take it or leave it' casual Christianity I NEED these things and that's ok!! It doesn't make me a weak Christian it means I know what I need to stay spiritually well, you wouldn't say to me if I told you what medication I NEED to take everyday that taking those medications make me weak, of course you wouldn't!


Jesus says "Those people who know they have great spiritual needs are happy because the kingdom of heaven belongs to them" Oh Amen Amen Amen! If Jesus tells me that me knowing I have great spiritual needs means the kingdom of heaven belongs to me then yup that's going to make me happy! It makes me want to dance!

Sometimes I take a Bible verse and close my eyes and believe, I mean really believe and visualise God saying those words to me, perhaps the best example of this is in Daniel when he                                                                                  talks of a vision where he sees a man "His body was like shiny yellow quartz. His face was bright like lightening and his eyes were like fire" Daniel 10 verse 6 he says in verse 19 "He said, Daniel, don't be afraid. God loves you very much. Peace be with you. Be strong now; be courageous". I close my eyes and imagine my guardian angel saying "Chloe, don't be afraid. God loves you very much. Peace be with you. Be strong; be courageous" I meditate on those words. Wow, God does loves me very much and he wants me to have peace but he also wants me to be strong and to be courageous and like I said before "I can do all things through Christ who strengthens me." You see? Truth.

Having knowledge of my Bible is the best tonic because when I get overwhelmed I can build myself up with these truths. I cannot advocate enough how important it is for Christians to read their Bibles! My Bible has more underlined, highlighted, post it notes, even teeny tiny bits of card celotaped in then I can count and I would implore you to do the same! Doing that means that when I am in crisis whether it's physically or mentally I can flick through my Bible and easily find what I need and start declaring those truths.

Finding God in suffering can be difficult but if we equip ourselves with Bible verse and prayers we can learn to block out the Devil and his whispers of how weak we are and that we can't get through something. Sometimes we can't see God in a situation because as it says in Psalm 91 he has hidden us under his wing to keep us safe.

Even through all my suffering I am so grateful that I am a Christian and I have my faith. Even when I am isolated from my friends and family I am never alone. In those dark hours when I had pneumonia and we weren't 100% that I was going to pull through I still had faith, at times I was emotionally in crisis because I didn't feel like I could 'feel' God but on reflection he and his angels were there the whole time. I was never on my own because I had angels guarding my bed. I was surrounded by the love of those who love me and somehow they found the strength, God given strength to sit by my side and see me through some of the hardest hours I have ever faced.

Having faith isn't about knowing the plan it's about trusting that whatever the plan is that God has for us he has anointed our future and like it says in the Bible "I say this because I know what I am planning for you, I have good plans for you, not plans to hurt you" Jeremiah 29 v 11 - 12

Being a Christian with a chronic disease and chronic pain is going on a lifelong journey where the road changes and you hit bumps and have to change direction but it's doing so knowing all the time you are on that road you are taking one step closer to heaven. Is there doubt? Is there confusion? Are there days of hopeless feelings? Yes, of course but at the end of those days you find your way back to your Heavenly Father and he is always waiting there arms one wide, thrilled to see you and I don't know anything that is much better then that.