Hello my lovelies, hope your all well!
From the 28th of September until the 4th of October is “Invisible Illness Awareness Week” which is another awareness week incredibly close to my heart.
I suffer with multiple invisible illnesses and some of you may be thinking (which is completely fine i get it) “well she’s in a wheelchair with a feeding tube, that’s hardly invisible” but reality is, these are just accessories which come along side my invisible chronic illnesses I fight daily. My wheelchair isn’t my illness, it’s something I’ve got to have because of my illness.
here’s what no one see’s about me;
It’s a hard one to explain which is why I’m here today to tell you as much as I possibly can about invisible illnesses and raise awareness – as that’s key!
So let’s get started:
What is an “invisible illness”?
Invisible disabilities are disabilities that are not immediately apparent. For example; Some people with visual or auditory disabilities who do not wear glasses or hearing aids, or discreet hearing aids, may not be obviously disabled. Invisible disabilities are chronic illnesses and conditions that significantly impair normal activities of daily living. Invisible disabilities, also called “hidden disabilities”, can hinder a person’s efforts to go to school, work, socialize, and more. Although the disability creates a challenge for the person who has it, the reality of the disability can be difficult for others to recognize or acknowledge. Others may not understand the cause of the problem, if they cannot see evidence of it in a visible way.
What makes an illness or condition visible or invisible?
Assistive devices, body appearance, and behaviour tell others you are ill or disabled. Devices include canes, wheelchairs, walkers, crutches, braces. Most of these are used for mobility. Body appearance can be things like skin colour, deformities, and scarring. Behaviour includes limping or other changes in gait, posture, sounds (like groaning), or facial expressions of pain or tension.
Chronic pain and many other chronic conditions are rarely visible to others. most people will not need assistive devices or give other signals that send the message “I’m sick”. Body appearances are often hidden, and illness behaviour may be suppressed or misunderstood. Many people with a physical problem look fine to others. Examples of invisible conditions are Arthritis, Asthma, Brain Injury, Chronic Fatigue Syndrome, Chronic Pain of most types, Cushing’s Syndrome, Cancer, Cystic Fibrosis, Diabetes, Dysmotility, Gastroparesis , Encephalitis, Heart Disease, Lupus, Lyme Disease, Meniere’s Diseas, Chronic Migraine Syndrome, Multiple Sclerosis in the early stages, Neurological and Seizer Disorders, Osteoporosis, Organ Transplant, Parkinson’s Disease and so many more.
Did you know?
– Less than 8 per cent of disabled people use wheelchairs in the UK. The majority of impairments are not visible.
– 1 in every 7 people are diagnosed with a chronic disabling illness meaning nearly 9 million people in the UK alone suffer with an invisible illness.
– 18% of the population in the UK are disabled.
– 45% are male and 55% are female.
– There is around 770,000 children aged under 18 in the UK that is 6% of the child population.
– The North East of England has the highest proportion of disabled people accounting for 22% of the population.
– Approximately 96% of people who live with an illness have an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy.
I thought it would be nice for me to join in with the Invisible Illness Awareness Challenge and tell you somethings you may not know about me & my illnesses. So here we go:
30 things about my invisible illness which you may not know!
Q1) The illness I live with is?
A1) Encephalitis, Gastroparesis, Thyroid Disease, Polycystic Ovarian Syndrome, Papilledema, Dysmotility (of the esophagus, stomach, small & large intestine, colon, bladder and rectum), Autoimmune Disease, Hypermobility (which is believed to be EDS), ME/CFS, GERD and more.
Q2) I was diagnosed with these illnesses in?
A2) I was diagnosed in 2014, 2015 & 2016
Q3) But I’ve had symptoms since?
A3) I’ve had symptoms since I was 14.
Q4) The biggest adjustment I’ve had to make is?
A4) adjusting to now being completely wheelchair bound, not being able to eat and everything that’s going on really.
Q5) Most people assume?
A5) that my treatments are working and life is getting better as I’m out and about but the truth is, everything is just getting worse. The treatments aren’t working and my health is declining every day but I just want to live my life despite them.
Q6) The hardest part about mornings are?
A6) trying to wake up every morning after a very restless and sleepless night, feeling like I’ve drank litres of alcohol but really it’s just my treatment causing my body to feel this way. It’s a nightmare.
Q7) My favourite medical TV show is?
A7) I’d have to say either 24Hrs in A&E or Children’s Hospital.
Q8) A gadget I couldn’t live without is?
A8) there’s no two ways about it, it’s my iPad & phone. It’s the one thing which keeps me sane throughout the bad days. Being able to socialise with my friends and family, is just amazing!
Q9) The hardest part about the nights are?
A9) the restlessness, the constant fatigue but not being able to sleep, the continuous pain radiating throughout my body, the severe sickness and being constantly uncomfortable.
Q10) Each day I take?
A10) 30+ tablets a day and that’s not including my harsh treatment I receive daily down my tube ect.
Q11) Regarding alternative treatments I do:
A11) art therapy to help me cope with my illnesses, hot water bottles, massages and I use over the counter medicines to help counteract some of the acute symptoms.
Q12) If I had to choose between an invisible illness or a visible illness I would chose?
A12) this one is a hard one for me, sometimes I wish they was visible so people wouldn’t assume things and people could see my damaged body but at the same time invisible as I don’t want to be treated any different despite my illnesses.
Q13) Regarding working and career?
A13) my mum is my full time career as I can’t do much for myself. I’m currently to poorly to go to work but I do attend college everyday for a few hours as my education is important to me.
Q14) People would be surprised to know?
A14) I do have days when I feel like I can’t go on, I have days where I sit and cry for hours because I’m mentally & emotionally drained as well as physically drained. I do only put my positive attitude on social media because I am positive most the time but I have my days and I’ve learnt that’s okay!
Q15) The hardest thing to accept about my new reality has been?
A15) learning to accept that the pain, symptoms and the illness itself isn’t going away and I won’t ever be cured is possibly the hardest thing to accept.
Q16) Something I never thought I could do with my illness that I did was?
A16) continuing education. once I fell ill I thought my education was pretty much finished and I didn’t ever think I could cope with the workload but I continued to work my butt off and smash every single exam I’ve taken and end up with 9 GCSE’s of C’s & above!
Q17) The commercials about my illnesses are?
A17) unfortunately and very wrongly there isn’t any for my illnesses. Although they’re life threatening and have killed thousands, no ones heard about my illnesses unless they are medically qualified or know someone fighting the same illness.
Q18) Something I really miss doing since I was diagnosed is?
A18) playing netball and doing kickboxing. I miss sport so bloody much!
Q19) It was really hard to have to give up?
A19) my life before my illness. it was hard to give up being able to properly go out with friends, go to education full time and do anything a normal teenager would do. That all got taken away from me very quickly.
Q20) A new hobby I have taken up since my diagnosis is?
A20) I’ve got two, makeup and I’ve started my own blog!
Q21) If I could have one day of feeling normal, I would?
A21) eat everything I could in site, run around Brighton and do all the things I’d love to do but can’t due to being ill or in a wheelchair.
Q22) My illness has taught me?
A22) so blooming much! but the main thing is to never take life, friends and family for granted. Living life to the fullest is very important and learning to take care of yourself is too. don’t go wasting your life, make memories that will last a life time, do whatever you can to make you happy as you honestly don’t know what’s around the corner, that’s the scary part!
Q23) Want to know a secret? One thing people say to me that gets under my skin is?
A23) “oh wow don’t you look healthier today, are you finally getting better”. Nope no I’m not, that’s because I’ve done everything I can to make myself look good & feel good within.
Q24) But I love it when people?
A24) support me, encourage me, comfort me, stay loyal to me and love me throughout this hard journey. all this means the world!
Q25) My favourite motto, scripture, quote that gets me through tough times is?
A25) “the only disability in life is a bad attitude” & my girls @jaydeallens quote “positivity always”.
Q26) When someone is diagnosed I’d like to tell them?
A26) don’t give up! despite all the hard times, the pain and the continuous symptoms, there’s always something worth fighting for. One day you could live to see the day the cure is found and say “I made it”.
Q27) Something that has surprised me about living with an illness is?
A27) how little the charities are funded to help towards finding a cure. how little the hospitals know about complex and rare illnesses and how little treatments are available!
Q28) The nicest thing someone did for me when I wasn’t feeling well was?
A28) supported me through the hard days and made everyday worth fighting for.
Q29) I’m involved with Invisible Illness Awareness Week because?
A29) it’s important people understand that invisible illnesses are rare but should be known about. raising awareness is key to help towards finding a cure one day!
Q30) The fact you read this list makes me?
A30) very happy & grateful towards you all!
thank you so much for taking the time to read today’s awareness post as it honestly does mean a lot to us who fight everyday! it isn’t easy but without you guys I wouldn’t be where I am today.
Please help me raise awareness for invisible illnesses by sharing this post round. It would mean a lot.
Sending you all tons of love as always,