EDS Fact #3




Body positivity!


This day and age it’s so easy to be sucked in and consumed by the media and all the “perfect” bodies we see on our TV screens, social media feeds and magazines. You only have to log in to be bombarded with pictures of girls with flawless skin, amazing figures and insane make up, but it’s not just girls, the guys are also athletic looking with great skin. I find it extremely sad that we live in a World where we are consistently judged on our appearance. We are made to feel that beautiful people are successful and nice when in reality it is what is on the inside that counts. It is even sadder that the “perfection” that we seek is totally unrealistic as most of the images have been photo-shopped and airbrushed. The images we see are all staged and shot at specific angles which are flattering to the models. They aren’t giving an accurate representation of what people look like and this makes so many people struggle with body image issues, myself included.
I’ve always struggled with my appearance. As a child I was fat, ginger, freckly, wore glasses and had braces, so needless to say I was constantly made fun of because of my looks. The deterioration of my health hasn’t helped me with confidence if I am honest. In the past few years I have had multiple surgeries leaving me with 8+ scars. We rarely see models with scars or any imperfections and therefore society doesn’t see this as the “norm”. For this reason since my first surgery I have been extremely self-conscious of letting people see my scars and covered them up. I stopped wearing crop-tops, would only wear high-waisted bottoms, began wearing swimsuits to ensure that my stomach was always covered and became extremely anxious. I was terrified of people seeing my scars and staring at me. I developed massive anxiety and didn’t even want to see my scars myself. I hated my body, I hated people seeing it and I hated seeing it myself. I was cheated on by my long-term partner and blamed myself, my appearance and my illness. I found myself in a downward spiral of depression.
Over time I have learned to deal with a lot of these issues. I began to accept my flaws and scars, not fully, but I am getting there. I have changed my mind set and now I know that my scars are not something to be ashamed of, but something to be proud of because they mean that I survived. If people want to stare at my scars then that’s okay, I understand that this isn’t the “norm” and that people aren’t used to seeing them.
This year I have managed to overcome one of my biggest fears. I bought myself a two-piece bikini (and it wasn’t a high-waisted one that hid my scars!) and I wore it! Now this might not seem like a big deal but to me it was huge! I was extremely anxious and people may have stared but my scars are a part of me and are tales of my journey so far. People are always going to be judgemental, unfortunately it’s human nature, but hopefully I can do my bit to raise awareness. I’m still super body conscious, I will never be skinny and I don’t have flawless skin. I have multiple scars, loads of stretch marks, a device implanted in my spine and so on but I am here, I am alive, I’m stronger for it and I am real. I have to make the most of every single day, be that on my feet, with a walking aid or in my wheelchair! So now the even scarier part, here are some photo’s of my scars. They are my battle wounds and a reminder to me that I am strong and I am a warrior! I hope that this post helps to raise awareness and if it helps just 1 person then that is enough.
Love & hugs, Charlie xoxo












Believe in yourself!


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!


EDS Fact: Number 83



Ehlers-Danlos Syndrome can affect every person differently and every case is unique. Even in one family there can be a very wide or very narrow range of severity. Symptoms and signs can vary for each type of EDS and can range from mildly loose joints to life-threatening complications. It is important to remember that everyone is different and to treat each person as an individual.

Not all disabilities are visible…


So lets be honest, although most of us probably don’t want to admit it, being judgemental seems to be human nature. I have judged people and I have been judged but we don’t know everyone’s story and it’s a sad trait to have. I guess a lot of it is to do with stereotyping. There are so many stereotypes out there and these seem to get passed from generation to generation and it really needs to stop.
I went to a hospital appointment recently with my carer and was waiting to park in the disabled bay. I’m a 25 year old woman with invisible disabilities and I was judged by two different people whilst waiting. A gentleman who was coming out of the bay wound his window down and made a hand gesture to call me a “w*nker” and an elderly woman who must have wanted the space called me a “silly cow” and waved her blue badge at me so I waved mine back at her! A similar thing happened to my friend recently. She is 18 and she was waiting for a disabled bay and an elderly woman wound her window down and told her that those bays were reserved for disabled people so she showed her badge and the lady then said that they were for “elderly people” and that she should go and park elsewhere.
Think about it. Have you been judged? Have you judged someone? We don’t know everyone’s individual story.
The really thin girl you assumed was anorexic may be desperately trying to put on weight or could be fighting an invisible illness that makes gaining weight difficult for her.
The guy you saw on crutches struggling to walk last week who is walking today may be suffering with a condition that varies massively, it doesn’t mean he was faking it.
Please try not to stare at the young girl in the wheelchair trying to figure out what is wrong with her.
The guy who has used the disabled toilet but looks “normal” could be suffering with IBD.
Not all disabilities are visible. Not all disabilities are the same. Think before you judge.

Love & hugs,
Charlie xoxo

Why being sick is a full time job.


I have gotten to the stage where I feel as though I have hit a brick wall with regards to my medical conditions. It’s so extremely difficult when you are fighting daily with your body and then on top of this have to fight with medical professionals who have never heard of your conditions, research specialists who do know about them, try to raise money to see these specialists who are not based locally and try to create your own plan. Then we have to explain why these things cannot be done on the NHS and that there is a massive lack of knowledge and that private appointments are not a luxury to us, but a necessity. Explaining to people that there is no cure and no treatments that can just take this all away so that we can live “normally”. Trying my best to raise awareness of these awful invisible illnesses so that others don’t go misdiagnosed until adult life. Being sick is a full time job.

I think back on the days when I would get waken up by my alarm in the morning, quickly hop out of bed, get washed, clean my teeth, get dressed, make the bed, do my hair and make-up, eat my breakfast and then make my way to work and this could be done within an hour and was just a daily routine that I took for granted. Now each of these things is a massive challenge in itself and can take an hour for just one task. Every action I take has to be carefully thought about and thoroughly planned around my conditions. If I make my bed and suffer an injury, such as a dislocated shoulder, will someone be around to help me try and relocate it? Can I really afford to do my hair knowing that it causes me a great deal of pain in my neck/shoulders? Can I risk taking a shower knowing that it may cause me to have a POTS attack and I will have to lie down for the remainder of the day recovering? These are all things that people living with chronic illnesses have to think about each day and are often risks we have to take.

Having to deal with people judging because your illness is invisible is tough. On the outside I may look like a healthy 25 year old woman but on the inside my body tells a completely different story. I often feel embarrassed to leave the house and ashamed to use my walking aids as people stare. I understand that it is human nature and luckily I have managed to block out people staring at me most of the time but it also affects the people I am with and makes them feel uncomfortable. So many people stare when I pull up in a disabled spot, eagerly awaiting to see if I actually have a blue badge, and when I get my badge out and carefully get out of the car with my stick they look away. I don’t mind people looking at me but rather than staring and speculating what could be wrong what I would really like is for someone to take the time to ask me. I would be more than happy to explain about these awful conditions that manifest in all areas of our bodies.

Some days are better than others. Some days, like today, I am exhausted and in lots of pain so struggle to do the smallest of tasks, yet others I can push myself to do certain activities. I struggle hugely with the concept of people judging me on my “good” days. If I have a face full of make up, hair done and I’m dressed nicely people often say to me that I “don’t look sick”. If I manage to do something I enjoy one day and leave the house I am sometimes asked “when are you back at work?” but in reality this is my job. I am sick 24 hours a day, 7 days a week. Unfortunately this doesn’t go away come Friday at 5PM. It doesn’t go away because it’s my birthday or any other day.

Please do not take this post as negative, I just wanted to share some of my thoughts. On the other hand my conditions have made me a much stronger and more mature person. You really appreciate everything so much more, like if someone comes round and makes you a cup of tea it may seem like a small gesture to them but to me it is a huge thing that I am very grateful for. Thank you for reading this. I hope that you are all as well as can be.
Love & Hugs,