I am often always thinking along the lines of something I call 'life reflect'. What I should be doing at my age, compared to what it has actually become. But I've come to realise that its probably healthier for me to have a moment to reflect and cry over these things. I often describe becoming chronically ill as the loss of a life. Some may agree some may not, but how things can change in just a day and you can go from one extreme of living a life to the opposite of living a life in bed through no fault of your own is a grieving process in my opinion. If I bottled those feelings up I feel it would eat me up inside.
Fear/Anxiety - I have noticed an increase in my anxiety over the years. Because symptoms and pain can often be particularly frightening, sharp and tend to change quickly and often I have become quite fearful of being somewhere I am not content with whilst in pain. The best way I can think of when I describe this is that because I feel a loss of control over my body and how a certain symptom can creep up on you at any point in the day, you never know quite how bad its going to be on the Ehlers Damlos Syndrome scale which lets face it, is never too pleasant. My best coping mechanisms are to usually shut myself away in my room to try and get through it without too much commotion going on around me which is difficult to do when you have company. I like to be as settled in my surroundings as possible, to be honest the only place I really feel relaxed and able to be me is home.
I fear being out and about with a friend and having to hide how much pain I'm in, or even not being near home knowing how panicked my pain makes me feel. I am usually apprehensive on agreeing to do something because I hate being a let down and then having to cancel. Luckily my best friend is brilliant, she will push me in my wheelchair when need be, drives me places when I am not able and knows that I cant be ready by a certain time with unpredictable pain or obstacles. Yet I still feel very alien like and a burden around people. I know they probably don't think I am but when a disability is so obvious its hard to not see it as a weakness. Fear also comes into play when thinking of the future, just last week I was told at an appointment that all they can really do for a patient like myself is keep them in the loop for check ups every few months, other than that there isn't much HELP with medication or cure. I've always know this would probably be the case but actually hearing it is heart breaking, nobody wants their life to consist of poor health and being in bed, especially when they are only young.
Emotions - It's no shock to anyone with chronic pain that your emotions are sometimes a huge role in acceptance of an illness. I often feel a good cry brewing and feel I might burst if I don't quite let it out. This is obviously a lot of anger, frustration, confusion and acceptance all rolled into one big tear fest. There are also emotional struggles with how an illness can make you feel abnormal, isolated, helpless, suffer in forms of pain, difficult friendships or relationships and not meeting the goals you set yourself. Every goal I think of feels so unreachable knowing the effects of chronic illness. I love the music industry and I've wanted a career in that for a while now yet realistically I don't think its going to happen. Having to give up or pause my hopes and dreams is not something any young
person should have to go through when their lives should just be beginning. Knowing how others have had to give up dreams in sport, dance, education and more is so heart breaking. The more I think of it the sadder it makes me because it shouldn't have to be that way.
Depression- This is obviously quite a taboo subject in this day an age, I feel quite nervous to even be typing about it as only close family members (those in my house) know that I suffer with depression and have for many of my years since becoming chronically ill . It's not something that is highlighted much, especially in young people and many people, including myself are embarrassed about the way that they feel. Before I start, everyone obviously has their own definition and scale as to what depression is/does.
We all want the best for ourselves and our loved ones in life, although its a given that nobody's life is perfect. I think people can still go about living their daily lives with depression as relatively moderate as can be. There are things to keep people busy, work, socializing, distractions, although still incredibly difficult for people to get through these days, but things can be seen or done as a great distraction. I for one have always wanted to be the best version of myself, learning and growing along the way. I was unclear of what exactly I wanted to do career wise like most teenagers but I knew that I wanted to work hard and do what made me happy. I always felt like I had my whole life ahead of me to worry about things going wrong.
Never in a million years did I think my life would drastically change at 13, that my days would be ruled by an illness and that I'd struggle with depression for many years as a result. It didn't even enter my mind as a young girl, the awful effect that pain could have on your state of mind. This is where I really struggle as I've forgotten how to heal myself and relocate my happiness ever since my pain came along. Its also a worry that if this pain is to never leave me, or get worse (which I am told by doctors it probably will), that I might always be this unhappy.
When you're chronically ill, its not as easy as taking your mind off of it by doing something as a distraction. Actually, nothing winds me up more than when this is suggested by others. With EDS it's not that easy to get up, plan a full day out, come home and keep repeating that pattern over and over until you feel happier. I obviously know that my depression stems from having to cope with an illness from a young age. Everywhere I go my mood follows me like a cloud of thick smog over my head. Everyday is a reminder how unsettling things are.
I don't feel I should go into huge detail about my own battle at the moment, but I'm sure many of you in similar situations have suffered with depression too when a situation is out of your control. Some days it consumes me to the point I feel a numb, broken, exhausted, breathless and a fragile like state and some days I am better at hiding how much I am struggling. I often say to my mum that all I want in life is to be happy, I would cope with pain all my life if it meant I still had my happiness. This doesn't seem to be the case, I've tried medication to help this but I didn't like how it made me feel (almost like a fake state of happiness yet nothing about my situation changed i.e - I was still feeling worse in my health), relaxation/meditation, hypnosis and other options. Different things work for different people and hopefully in time I will find something that helps to supress my sadness. If any of you can think of anything I would be intrigued to know too!