Welcome to You Don’t Look Sick – our new weekly series about invisible illness and disabilities.
There are 13.9 million disabled people in the UK, but for many of them, you would have no idea anything is wrong.
Lots of people suffer from debilitating symptoms and daily struggles but when they are out in public, they are challenged when they use priority seats or disabled parking.
They’re told ‘but you don’t look sick’ because they don’t use a wheelchair or something people associate with disability.
This series is a look at what it’s really like to live with a disability or illness that no one can see, discussing the symptoms that affect their lives every day and how they are treated when they are out in public.
Kim Lam, 32, from Aberdeen, Scotland, has Chronic Obstructive Pulmonary Disorder (COPD), a condition which causes long-term inflammation of the airways.
COPD usually affects older people and people who are heavy smokers but Kim was in her 20s and had never smoked.
Outwardly, Kim looks like a normal healthy, young woman but her condition means an intense schedule of medication and breathing exercises just to make sure her lungs can cope each day.
On a good day, she can leave the house and do normal day-to-day things but she has to be careful not to over exert herself.
But when she uses things like disabled parking spaces, she has faced judgement.
She explains: ‘My condition really can vary, I can have a really good day, go for a walk, go to the gym etc and feel fine, but just as quickly, I can feel very ill the next day. It’s just about balance and being careful – not overdoing it, but not being afraid to challenge myself slightly.
‘I have had people say things like “but you don’t look sick”. On one occasion, I had parked in a disabled spot in the shopping centre (with my disabled badge) and got a scathing remark from a young couple who were with their baby in a pram. The woman had retorted that those spaces “are for disabled people only”.
‘I was too shy at the time to speak up but my boyfriend at the time screamed back and asked if she had any idea what condition I had and told her she shouldn’t be judging people based purely on their looks.’
Kim, who works as a marketing manager, was diagnosed five years ago when she moved from Scotland to London for work and suddenly her health deteriorated.
She explains: ‘After about three months of living there, I noticed I was getting more and more breathless, experiencing what seemed like severe asthma attacks.
‘I struggled going up one flight of stairs and sometimes when my body was run down, even just walking at a fast pace got me out of breath.
‘I started seeing a chest/respiratory specialist in London, where continuous tests were run from MRI/CAT scans, blood tests, breathing tests etc.
‘I was hospitalised about 11 times over two years in London, all because of an inability to breath properly or constant chest infections.
‘Eventually, I moved back to Scotland with the support of my work and doctor, to see if a less polluted environment would make any difference.
‘Under a new respiratory team in Scotland, I was eventually diagnosed with COPD.
‘It’s usually associated with heavy smoking or old age, but neither of those are relevant to me.
‘I was born with under-developed lungs when I was a baby but ‘grew out of it’ when I was two.
‘Doctors back then diagnosed me with asthma and I never really had any problems in child or adulthood until moving to London in 2014.
‘I guess the vulnerability of my lungs and the pollution brought it all to surface. COPD is a progressive disease, so it is hard to notice it, until it is too late almost.’
When she was diagnosed, Kim said she was overwhelmed with a range of emotions.
She adds: ‘I was constantly searching for answers because my lifestyle didn’t match up to the diagnosis. I have never smoked a day in my life, don’t drink, eat healthily and fairly active.
What is COPD?
Chronic obstructive pulmonary disease, or COPD, is a group of lung conditions including bronchitis and emphysema that make it difficult to empty air out of the lungs, because the airways have been narrowed.
Symptoms include breathlessness doing everyday tasks like walking upstairs and a persistent cough.
COPD usually develops over time due to long-term exposure to harmful substances.
The most common cause is smoking, however working in an environment where you are often around dust, fumes or chemicals can also lead to COPD.
Some people are more affected than others by breathing in noxious materials.
COPD is a long-term condition and currently there is no cure, however treatment options are available.
‘That’s where the anger and bitterness part came in and I was in a ‘why me’ mentality.
‘It really didn’t make sense to me at the time and I couldn’t understand why I’d be subject to such suffering.
‘The constant hospitalisations were exhausting and I felt I was ‘missing out’ on a lot- from career opportunities to normal social functions.
‘It was also overwhelming, it was a lot of information to take in and had its emotional toll.
‘It was life-changing. I did lose a lot of confidence at the time, my ambitious nature was gone and all of a sudden, I was avoiding or couldn’t attend social affairs.
‘Both physically and mentally, it was exhausting, restrictive and seemed very unfair.’
After moving back to Aberdeen, Kim started to take control of her condition and has learnt how to manage it.
She says: ‘Thankfully I am 10 times better now I have, not just moved back to Scotland, but also because I have learned so much more about the condition.’
Now Kim is doing well thanks to a strict treatment routine and careful monitoring but she still has stays in hospital, particularly in the winter months.
‘It can vary and it can be unpredictable. Most days I am generally okay, but it is always a challenge to do any form of exercise or to go walking for example,’ she says.
‘Even in my daily practice of yoga, I go at my own pace but do enough so I can continue to strengthen my respiratory muscles.
‘I still do all of these things, but it might be at a slower pace than others. Any faster, I get really out of breath.
‘The other byproduct of it is lying down, on a bad day, the wheezing gets in the way. So going to sleep can be a challenge sometimes but that is why breathing exercises are so important.
‘What is more trying about this condition is vulnerability though. I will get constant infections, such as cold and flu, more so than other people.
‘If you’re immunocompromised already, you’re more susceptible, so you have to work harder at avoiding these.
‘Winter is the most challenging time and even as a recent example, I was in hospital in September 2018 because I picked up a superbug, then in November because I got the flu.
‘It’s not just a sniffle for us, it’s dangerous and it lasts much longer. Keeping your immunity up is very important.
‘People don’t realise I spend about an hour or more in the morning just to accommodate to my condition.
‘I’ve just come off a feeding tube, which I had to wear for two months, as a result of catching the flu and being hospitalised in November 2018 and losing too many calories.
‘My weight was dangerously low (not because I didn’t eat, but because my condition meant I burn calories up to 10 times more than average) and we all know weight impacts immunity and my ability to fight off infections at the time were terrible.’
Dealing with the condition has also affected Kim’s mental health, which is common among people who are dealing with invisible illness.
She adds: ‘Mental strength is important because it’s what sees you through and keeps your spirits high. There are times where I’ve missed special occasions, such as a friends 30th birthday or had to cancel my yoga trip to Bali, due to hospitalisation and poor health.
‘These things have reduced me to tears and for the first time last year, I experienced full-on depression.
‘I entered a state where I almost ‘gave up’, for lack of a better phrase. I got to the stage where I was fed up of the constant battles, I didn’t want to continue a life with hospitalisations, ill health or for it to ‘get in the way’.
‘At the time I felt like it was a poor quality of life. I couldn’t understand all the suffering nor what my purpose was. And for those two months, it was either non-stop crying or I was staring into space ruminating over everything.
‘I couldn’t speak much, not even to my family or friends, who were there by my side and every step of the way, willing me to get through. I couldn’t get out of bed, I couldn’t motivate myself and I couldn’t see my own worth at the time.
‘But somehow, I pulled myself out of the pits. Because it’s worth remembering you don’t go through all that for nothing and everything is temporary.
‘I went back to the basics of gratitude and started to just focus on positive aspects of life. It was also a time where I really immersed myself in proper counselling with a focus on Cognitive Behavioural Therapy.
‘This has helped me greatly and therapy isn’t anything to be ashamed of. Many people need help and bettering yourself just means you value and respect yourself enough to do so.
‘Depression and anxiety is common among society and can be even more prevalent in those with a chronic condition because there are extra obstacles to cope with.’
Kim feels that people don’t know enough about invisible illness and there needs to be more down to raise awareness.
‘When people challenge me about being disabled it really angers me, because they really never know and never think about it before saying anything.
‘I had an internal disability. I could have a colostomy bag, be an amputee with a false leg, or just be recovering from surgery. I ask myself, why I was try to justify it, because essentially I have broken lungs, but no one can see them. It’s inside and it’s invisible but because I’m not in an visible wheelchair, people don’t see it as disabled.
‘The same goes for mental illnesses, I know many are discriminated against this. And we have a long way to go before equality for these sorts of things, but that’s why it is important to raise awareness.
‘I do not expect VIP or special treatment, but I do expect awareness, respect and consideration from others.‘
She is keen to normalise the way we speak about illness and disability by talking about it openly online.
She says: ‘I think we’ve to begin with understanding how people consume things today. No one is going to read a medical journal and usually people only start panicking once they’ve been diagnosed with something. We need to be much more proactive than this.
‘I think we need national awareness campaigns and mandatory tests as part of routine health MOT’s.
‘If we think about the mental health awareness campaigns – they have come really far, driven by a lot of celebrity endorsement from the likes of Lady Gaga, Selena Gomez and Demi Lovato. Being outspoken about it, helps to normalise things. And knowledge is power.
‘Personally, I’ve come to a stage of acceptance and it has made me realise priorities in life, gave rise to my passion for yoga, increased my levels of compassion for others, gratitude, learned what brings happiness and contentment. It has been eye-opening.
‘The growth hasn’t been instant. It’s taken 5 years, and I’m still learning. But that is okay, it’s a miracle in itself too. I’ve also realised how much I want to help others going through a similar thing, which is why I started my blog. Its purpose is to provide advice, tips and guidance on navigating this condition.’
You Don’t Look Sick is a weekly series telling the stories of people with invisible illness and disabilities. Next week, we speak to Amelia who has multiple sclerosis.
How to get involved with You Don't Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that takes you inside the places in London people are renting, to give us all a better sense of what’s normal and how much we should be paying.
If you have an invisible illness or disability and fancy taking part, please email firstname.lastname@example.org.
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.