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
Dear person who left this note in my car,
Thanks for judging me when you don’t know me. What gives you the right to decide that I am not worthy of a disabled space?
I may look like a “normal” young woman but that’s because I try my best to fit into society and not let people know that I’m in pain. I’m not pretending to be sick, I’m pretending to be well.
I have numerous invisible health conditions. I have a rare genetic connective tissue disorder called Ehlers-Danlos Syndrome. This is a multi systematic condition and affects everything from my brain, my joints, my heart, my bones, gastrointestinal system, in fact there is very little that it doesn’t affect! I also have other invisible illnesses such as gastroparesis, dysautonomia, raynauds and many more. I don’t shout about these as I’d like to live my life as best as I can. These conditions vary massively from day to day. I have carers, district nurses, lots of hospital consultants and appointments. I shouldn’t even be explaining myself to someone who is so judgemental but I feel it is necessary to educate you and your small mind. Next time you see someone and think they don’t deserve a disabled spot then why not ask what’s wrong? I’d prefer to explain how my conditions affect me to your face rather than be left an anonymous note. I’ve had two surgeries in the past 8 weeks and numerous infections including a spinal one I am currently fighting so I think I’m allowed to park a few steps closer to the door thanks.
Please think before you judge someone. You have no idea what’s going on in people’s lives!
Living with a chronic illness is tough. Daily life can be a struggle and the stigma and lack of understanding that often comes with disability can add to the challenge. Not only can it be difficult for the ill person, but often other people don’t know how to act or what to say to someone who is living with a chronic illness so I created this list of what not to say!
What not to say to someone with a chronic illness.
But you don’t look sick.
Not everyone who is sick has physical signs. Many of us can look completely healthy on the outside but if you could see inside it would be a different story. Many of us don’t want to look ill so we do what we can to look as “normal” as possible, like putting on make up. Just because you can’t see something it doesn’t mean it isn’t there.
Why haven’t they made you better yet?
If we could be made better then I think we would be better by now. A lot of us have incurable conditions and treatment is very limited so having to try and explain why we aren’t better can be very frustrating and bring up all sorts of emotions that we have this for life.
When are you back at work?
Have one good day and then everyone is like “so when are you going back to work?” I would love to go back to work but please do find an employer who is willing to accommodate my multiple hospital appointments per week, who understands that today I just can’t physically get out of bed so I won’t be in, who doesn’t mind if I pass out and stop breathing due to extreme pain levels so I don’t get my work load done. There are good days and bad days but at the moment there are more bad days than good so it wouldn’t be fair for me or my employer for me to be back at work. Being sick is a full time job, 24hours a day, 7 days a week, 365 days a year.
You’re too young to be sick.
Hang on let me just get my ID out and tell my multiple conditions that I’m too young
It must be great sitting and doing nothing all day.
Contrary to popular belief it’s not fun just sitting or lying in bed all day in lots of pain, I would much rather be at work and doing something productive. If I have a good day it doesn’t mean I’m cured and I can go back to work tomorrow.
It’s all in your head.
For someone with a chronic illness the most powerful words someone can say to you is “I believe you”. It isn’t all in our head.
Have you tried…
I appreciate you are trying to find a solution and I will do whatever I can to help myself but please remember that everyone is different and what works for one person may not work for another. If a simple dietary change could cure me I think I would have found it by now.
At least you don’t have…
Everyone is fighting a battle you know nothing about. Yes there are people worse off than me and I am exremely lucky but there are also people better off than me. I don’t want people feeling sorry for me, I just want understanding.
“Saying someone can’t be sad because someone else may have it worse, is like saying that someone can’t be happy because someone else may have it better.” – Unknown
I hope that this little piece helps.
Love & Hugs, Charlie xx
1 in 4 people will experience some kind of mental health problem in the course of a year.
Mixed anxiety and depression are the most common mental disorder in Britain.
Women are more likely to have been treated for a mental health problem than men.
10% of children have a mental health problem at any one time.
Depression affects 1 in 5 older people.
Only 1 in 10 prisoners has no mental disorder.
Suicide rates show that British men are three times as likely to die by suicide than British women.
Self-harm statistics for the UK show one of the highest rates in Europe: 400 per 100,000 population.
Over the years mental health has been a very taboo subject with some people stating that it simply “doesn’t exist”. Mental health issues DO exist, it isn’t like Santa Claus or the tooth fairy, these conditions are REAL and are affecting people every day. Just because someone may not understand something doesn’t mean that it doesn’t exist, that’s like me saying I don’t understand physics, it doesn’t make physics any less real.
Mental health problems can range from a worry we may feel during the day to a serious long-term condition. Lots of people who have mental health problems suffer in silence as they are afraid of what other people may think and their reactions, this includes myself. Help me raise awareness of mental illness and show people that mental health issues are REAL. Help make the invisible, visible!
If you are suffering with a mental health condition there is help out there and it is very important to get help. Please never feel alone. There are lots of amazing charities and organisations out there who offer help and support such as: