Coming up for Air: My Hidden Disability

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“Coming up for Air” – Pixabay

In 2010 I was diagnosed with an interstitial lung disease and life became very different from that day.

My husband was with me at St Thomas Hospital when I received my diagnosis, and although the actual words of my consultant remain a vague blur, I can recall clearly sitting in a taxi and thinking South London never looked so beautiful that late September afternoon.

Did I have a forty a day habit? Was I violently ill? Had I had an accident?

The answer is no. One day I was out running – just a short hop around the block, nothing too strenuous – when I noticed my lungs were burning. It felt like my whole chest cavity was on fire.

I didn’t pay much attention to this. I just flagged it up to overdoing it and then went on about my usual business.

Not so long after I started to frequently find myself unable to breathe in unexpected circumstances. Sitting watching television, in the office, on public transport, lying in bed. I lost count of the times I was attended to by ambulance crews. I even got to know one of the paramedics quite well! Aside from giving me oxygen and monitoring my fast heart rate, not much else happened.

My GP diagnosed asthma, but the inhalers didn’t help, and things were gradually getting worse. On another late night visit to A&E the duty medic said he thought this was something more serious that asthma. So that’s how I ended up under the excellent care of Guy’s and St Thomas Hospital, and why I’m writing this now.

The scary bits

There was talk of scary things like lung transplants, and complex interventions that I furiously Googled (not recommended, but we all do it). Or other people would Google and start to visit me more often, saying quietly “Did you read the bit about life expectancy?”

All my allergy tests came back negative, all the heart scans clear. It was agreed my disease was ‘idiopathic’ which basically means there is no known cause. So I learnt a new word and a new way of life. Later on I would discover the aggressive steroid treatment had damaged my kidneys and caused cataracts to develop – but these were minor issues in comparison.

Why did this happen? Simply because I have an auto-immune condition whereby my body has decided to attack my airways, just because it feels like it.

I needed a lot of support in the early days. The British Lung Foundation has a great website (www.blf.org.uk) and runs a helpline staffed by respiratory nurses that really know their stuff.

The world of work

To declare or not to declare? Hidden disability, that is. I had loads of hospital appointments to attend, months of sick leave, was referred to Occupational Health and finally ended up working reduced hours, much of them from home.

I was lucky. Working as an equality and diversity official in the public sector meant I understood management and HR processes. I also knew what was expected from my employer. Many don’t, and for some, just having that initial conversation with management can be daunting.

Even with my background, I did not feel I could look at new roles or promotion. My department had done so much to support me; I didn’t want to seem ungrateful. And did I really what to start the process all over again with a new employer? The problem is I always look reasonably well, and I still have my intellect intact.

Advice to readers

If I was asked for advice on declaring a hidden disability now, I would say yes, but if this is a new role, wait until you have your job offer. Speak to the HR department and explain what support you need. I had two lap tops, one at home, one in the office. If I had a difficult day and couldn’t get in, I worked at home. This proved particularly useful when I was having daily infusion treatment.

If you are newly-diagnosed and need to have the initial conversation with managers, remember you can also bring a friend along for moral support (do let your manager know beforehand). Or ask to be accompanied by a member of your Union, if you are a member.

Spend some time planning. What do you want to say? In my experience you really don’t need to tell them absolutely everything. Important things are how it will affect your ability to undertake your duties and predicted absences from your place of duty. If you have one, take along a copy of your job description. Are there any deadlines looming that you can’t meet? Any tasks that you will find difficult? Try to think about what would help you and make suggestions. Bear in mind your manager probably won’t know anything about your condition so don’t expect them to have all the answers straight away.

Reasonable adjustments

Maybe all you need is a different chair. Or to sit away from the air conditioning. Or, as in my case, more flexible working. Remember that in certain cases the DWP will reimburse your employer with the costs of some adjustments under its Access to Work scheme. Your HR department should know how this works, but you are usually telephoned by an adviser who will assess your case to see if you are eligible. They will also keep in touch with you to make sure any adjustments requested have been put in place. For more information have a look at www.gov.uk/access-to-work or www.disabilityrightsuk.org/access-work.

Final thoughts

On my darkest days I took inspiration from a wonderful lady in the US called Christine. Her blog is called Living on O2 for Life. She is well worth a read if you rely on ambulatory oxygen.

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