You Don't Look Sick: 'My condition is so rare, the doctor had never heard of it'

Living with an invisible illness means facing a range of symptoms everyday, but on the outside, you look healthy.

Our weekly series You Don’t Look Sick looks at how people deal with different hidden conditions and the stigmas they face when they use disabled bathrooms or parking spaces because of how they look

James Conway, 32, from Gloucester, has a rare condition called Rosai-Dorfman disease.

It causes overproduction of white blood cells in the lymph nodes, which can build up around the body. Symptoms include fever, weight loss, malaise, joint pain, and night sweats.

He works full-time in financial services but says that having an invisible illness has made finding work harder for him because employers don’t always understand.

He explains: ‘I’ve seen people’s eyes start to glaze over when I’ve tried to explain my condition – they don’t want to have to deal with it and are just willing me to go away.

‘The worst problem has been in attempting to find work as once there’s gaps on your CV or you mention the phrase “medical condition” to a recruitment consultant you may as well have e-mailed your cover letter to a ‘Do Not Reply’ address.

‘Thankfully my current employer has bucked the trend and are very supportive.’

James started to experience health problems in September 2010, shortly after he came back from travelling around Europe.

He says: ‘I noticed that the lymph nodes in my neck were swollen and sensitive. I assumed it was a delayed reaction to a bug I’d picked up while I was away.

‘The swelling didn’t subside so I went to my GP who referred me to my local hospital. I saw a consultant hematologist who arranged a biopsy which I underwent under local anesthetic in November.’

In February 2011, he was diagnosed with the condition, which has only had about 650 reported cases worldwide since it was discovered in 1969.

James adds: ‘I had never heard of Rosai-Dorfman disease, nor had my parents, or indeed the consultant. He explained that it was an incredibly rare illness of unknown origin with no established treatment program.

‘Although benign in itself, as an auto-immune disease there was the potential for complications and the almost complete absence of knowledge of the condition meant that I was still in the dark.

‘I was put on 60mg of steroids which made me feel great but didn’t shrink the nodes in my neck at all. I was obviously glad that it wasn’t a malignant diagnosis but wished it could have been something common.’

Since then, James says that both the illness and the medication he takes for it have caused a range of side effects that affect his every day life.

He says: ‘My nodes would periodically swell up making me look like The Elephant Man before retreating.

‘In late 2012 I fainted in the street on my way to work and was diagnosed with haemolytic anemia (the abnormal breakdown of red blood cells) which didn’t burn itself out until 2015.

‘I had to undergo several blood transfusions which each necessitated a full day in hospital and in the periods between, I experienced the effects of a low hemoglobin (HB) level, namely breathlessness and fatigue. I got out of breath climbing the stairs.

‘In July 2013, I left work feeling terrible and ended up in hospital with neutropenic sepsis after a new drug I’d been put on wiped out my white blood cells. That was a low point.’

He says that was a low point and it took some time for him to bounce back. He had to resign from his job and move back in with his parents.

He adds: ‘Since then I’ve also been in hospital with pneumonia, a severely low blood count, had excruciating gallstone attacks, a blood clot that required six months of daily blood thinner injections and latterly the odd panic attack and low mood.

‘The disease has also manifested in my lungs but thankfully appears to have stopped progressing there with only minimal damage caused.’

Taking steroid medication helps with his condition but it does mean he is at risk of gaining weight.

He says: ‘I have to watch what I eat as just looking at a burger can cause me to gain 5lb.

‘While good at controlling the disease, they’re not good in the long run and I have scarring and weak bones as a result of prolonged use, as well as a flushed face.

‘I currently have a stable level of hemoglobin but I could do with it being higher as I’m limited in what I can do; I can’t walk all that fast and can only do sedentary work.

‘On a good day I’m more or less fine provided I don’t exert myself too much. On a bad day I’m fatigued, irritable and anxious. Thankfully the good mostly outweighs the bad but the sad fact of the matter is that the illness does rule my life and I have to live with it.’

James has a lot of support from his medical team, as well as from his friends and family but admits that having a rare illness means it is difficult to find anyone who really understands what he is going through.

‘I am under the care of an absolutely brilliant team at Hereford County Hospital who go above and beyond in their care and professionalism.

‘Sadly as my condition is so rare there are no support groups or anything of that nature and no-one else I can find who has the illness so I’m a lone wolf in that regard.

‘My family and friends are all great and do their best for me; they know my limitations and understand why I can’t help someone move house or go paintballing on a stag do.

‘I try not to overdo it, take each day as it comes and not plan too much. I’ve tried meditation and counselling but it’s not for me. I much prefer a cold beer and some loud death metal.

‘Thankfully my friends treat me just the same as everyone else but know I may need to stop to catch my breath or sit down for a couple of minutes.

‘They don’t treat me with kids gloves and I fully expect to get my share of friendly abuse as well as everyone else.

‘ It can be awkward explaining my condition to new people but I’ve never really had any negative reactions that I’m aware of. People are a lot more understanding these days, although if you’ve been annoyed at being stuck behind me while I’ve been walking slowly – tough shit.’

James wants to see more awareness around invisible illness and for people to understand that not every disability is visible.

He says: ‘The sheer amount of people who can’t seem to grasp that there’s a sliding scale of illness and not everyone who’s sick is in a wheelchair or ‘looks ill’ is staggering.

‘Disabled people face prejudice every day and hate crimes need to be punished more severely.

‘I’d start with educating children from a young age that people with hidden or un-hidden illnesses are all around them, should be treated with respect and are just trying to live their lives as best they can.’

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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