This week, new figures revealed that 93% of people would challenge someone who looks ‘healthy’ for using a disabled toilet.
There’s a huge problem around invisible conditions as people don’t realise that not all disabilities are visible
Thousands of people suffer from debilitating symptoms but because you can’t see them, they face abuse.
Our series, You Don’t Look Sick, speaks to a different person with a different condition every week to show the reality of living with an invisible illness or disability.
Rachael Jarvis, 23, from Cheshunt, Hertfordshire, has sickle cell anaemia.
It is an inherited blood condition that means the body produces red blood cells that are an unusual shape that don’t live as long as normal red blood cells.
It causes painful episodes called sickle cell crises, which can last up to a week. People with the condition suffer from tiredness and shortness of breath because of anaemia and an increased risk of serious infections.
It mainly affects people of African, Caribbean, Middle Eastern, Eastern Mediterranean and Asian origin.
She explains: ‘The doctors told my parents that because they were both carriers that I might have the condition. When I was born they did a blood test which confirmed that I had sickle cell anaemia. I started to experience symptoms of the condition when I was six months old.
‘I was a baby so obviously I don’t remember what it felt like, if anything it was like my parents were being diagnosed and they felt a mixture of sadness and guilt.
‘I only realised that I was a bit different and had sickle cell when I was at school one day and suddenly felt this excruciating pain in my tummy, I didn’t want to tell anyone because I thought I was having this pain because I had done something wrong so I did not want to get in trouble but I finally ended up telling my dad and that’s when he told me I had sickle cell and I would get this pain
‘I just remember feeling quite said.’
Now 23, she tries not to let it hold her back but says that there are days where it causes debilitating symptoms.
She explains: ‘On a good day I take 10 tablets a day; four different medications. This medication won’t cure me, it will only help keep me as “well” as possible.
‘When I feel well, I can get ready all by myself, and even do my makeup. I go to work and will usually complete a 12 hour shift. If it is a day off I may meet up with friends for food or cinema. I can do a bit of cleaning around the house – just normal things.
‘Although I can do all of this, I do have fatigue and often wake up feeling quite tired, I have as many naps as I can during the day and I even take naps during my lunch breaks.
‘I do always have chronic pain, its constant and I have had this pain since I was 11 years old. It feels like a headache but in different parts of my body, it’s always there and I am always aware of it but I can do my normal daily activities.
‘On a bad day I take 50 tablets a day (sometimes more depending if I have an infection or complication) which is 12 different medications.
‘I can’t wash myself, I need help to get to the toilet, I can’t walk or sometimes find it hard to talk.
‘As a result I don’t leave the bed. I can’t even use my phone as it takes too much energy and strength.
‘The pain is so debilitating it leaves me feeling extremely tired and weak – to the point where I am unable to open a bottle of water or a packet of crisps (just for reference).
‘My chronic pain is still there but it is often masked by the debilitating acute pain. I don’t eat properly due to lack of energy and pain. I have to really force myself to drink something.
‘Due to the pain being so severe my body does not allow me to sleep even though I am extremely tired, so I end up going through this cycle of my body being in severe pain and feeling really tired, like extreme jetlag tired and needing to sleep in order to rest my body, to being in such severe pain that I am unable to sleep.
‘It drives me crazy, at times it feels so bad that it doesn’t feel real, I start to think that I am not alive because how can I be? No ones body can go through this torture. Much like cluster headaches, a sickle cell crisis makes you feel suicidal, death becomes the nicer option than to endure this pain.. A bad day is a physically, mentally and emotionally draining roller coaster.
‘Everyday with sickle cell is so varied. To the point where I could be having a good morning but by the afternoon it turns bad. A crises can happen anytime anywhere and I can go from feeling really good to really bad in a matter of seconds.’
Having a crises in public has been particularly difficult for Rachael as she feels people judge her because they don’t realise that she is actually in pain.
She adds: ‘I was walking to the bus stop and I began to have a crisis, the pain was intense to the point where I was basically crawling to the bus stop.
‘When I finally got there I had to lay across the red bench, I was trying to hold down the pain so on the outside I looked normal but because I was laying across the bench and not giving anyone else the chance to sit down, they were looking at me like I was selfish and rude and it was the worst because I couldn’t even tell people that I was too unwell and that I would normally allow others to sit down.’
Throughout her life, Rachael’s friends and family have been able to support her and she’s also a big fan of Jessie J, who has a heart condition. Rachael says that seeing her speak out about it has really helped her feel more confident about telling people about her own condition.
She explains: ‘She also has a long term condition and she is so inspiring to me, she has written songs about her condition and hospital stays which I can totally relate with.
‘She knew what it was like to be unwell as a child and she spoke openly about it and from there I just fell in love and her voice is amazing.
What happens during a sickle cell crisis?
Episodes of pain – known as sickle cell crises – are one of the most common and distressing symptoms of sickle cell disease. They occur when blood vessels to part of the body become blocked.
The pain can be severe and lasts for up to seven days on average.
A sickle cell crisis often affects a particular part of the body, such as the:
- hands or feet (particularly in young children)
- ribs and breastbone
- legs and arms
‘I remember going to concerts 12 hours early just to be able to be at the front so she would see me, I even wrote her letters and got pictures in return.’
She feels that there needs to me more education and more people speaking out about invisible conditions to help change attitudes.
She said: ‘I think there needs to be more education in schools. I completed a nursing degree and we didn’t have one lecture on my condition which is crazy because as a nurse you may end up looking after a lot of sickle cell patients, especially if you work in London.
‘I think people need to be more aware and not so quick to judge, for example, if a person who may not look “disabled” is sitting in the priority seat, think before you ask.
‘Personally for me, if I am in a priority seat and I am having a good day, I will give up my seat to someone who I feel may need it more, but if I am having a bad day, I am physically unable to give up my seat.
‘Before you forcefully tell them to get up, just think, can they get up or will it cause them excruciating pain?’
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.
If you have an invisible illness or disability and fancy taking part, please email [email protected]
You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.
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