So this video was really difficult for me to upload as I struggle massively with letting people see me like this but this is the ugly truth of what a “bad day” can be like for me.
How can I expect others to understand if they only ever see the smiley happy Charlie, when quite often this is my reality? We also need to raise awareness of invisible illnesses to stop the judgement that is still surrounds disabilities. No one should have to explain and prove how sick they are.
Have you got any stories about times when you have been judged? Please pop them in the comments below, I’d love to have a read!
Living with a chronic health condition can be tough. Life is a constant battle against your own body and it’s so exhausting. I’ve come to terms with the fact that I may not be able to do certain things that I’ve always wanted to do at ease (such as going to Glastonbury which I’ve been watching on the TV and have gotten extremely jealous) but there are things that I can do. I’m trying to take steps to improve my health as much as I can and focus on the things that I do have control of. It’s draining pretending to be okay when you really just want to lie in bed and cry but I refuse to let this condition beat me. It’s frustrating knowing that having a “good” day and making the most of it by doing something will more than likely lead to repercussions in the form of fatigue and more pain but I can’t let that stop me from enjoying those days. I can’t just sit in waiting for a bad day to happen and waiting for the next flare. That isn’t living, that is existing. I am determined to live the best life I can, even if it may be different than I planned!
Love, hugs & hope, Charlie xoxo
The past 12 months has been full of ups and downs. I have formed new relationships, had relationships break down, moved house, started a degree and many other memorable things. Sometimes I feel as though it is important to look back and reflect on what has changed and what I’ve actually achieved. I guess that day by day things don’t seem to change but when you look back everything is different. There is no doubt that having a chronic illness can put a lot of strain on romantic relationships. I had a romantic relationship break down last year. The relationship started before my condition began to deteriorate and before I was actually diagnosed with Ehlers-Danlos Syndrome and this brought me a great deal of guilt. I guess that I felt as though I had somewhat tricked my partner at the time because he started building a life with a healthy-ish young woman who went to work, went out with friends and was able to do fun stuff and then years later, during my lowest periods, was stuck with a very sick person who could hardly leave the house. I think I started blaming myself for the breakdown of the relationship but looking back I was and I am still me, just a slightly different version! If people can’t see that then it is their problem,
For a while I lost myself. I didn’t want to see anyone. I didn’t want to do anything. I felt extremely low and I thought that life couldn’t possibly get any better. I felt trapped in my body and couldn’t see a way improving things but I did. I managed to turn my life around somewhat and yes, there are still lots of things that aren’t perfect but I have been able to change some things for the better. I believe in myself now. I have discovered that a bad day doesn’t have to be a bad week. I have come to terms with the fact that some days I am going to feel better than others and yes, it is very frustrating that I can’t do some of the things I enjoy doing but I have realised that there are still things that I can do!
I think that acceptance is one of the most difficult things to deal with when being chronically sick. It is hard to accept that you might not have a day when you are “pain free”. It is hard to accept that you may not be able to do some of the “normal” things like work 9-5. My dreams of travelling, having a family, running a marathon etc. may have to change slightly but I have accepted that and realised that it doesn’t mean it won’t happen, I may just have to go about things differently. I have lost some people through getting sick but I have also met some amazing people and realised who is really there for me. I am so thankful for the people that see me for who I am, Charlie the music loving gig-junkie, rather than Charlie who is sick!
I guess the point of this post is just to say don’t give in. Don’t let anyone take you for granted. Don’t let anyone make you feel like you owe them something because you are ill. Don’t let people treat you differently. If someone judges you then it speaks more about them that about you. Follow your dreams. Believe in yourself. I believe in you!