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.