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Living with multiple ‘invisible’ conditions

Published on 26/05/20 at 01:05pm

Darren Taylor lives with a range of conditions including Dercum's disease, cystic fibrosis, fibromyalgia with chronic fatigue, and Tietze syndrome, many of which are misunderstood. He relays the impact that these coexisting conditions have had on his life, and discusses in his personal experience the social attitudes that the public and even medical staff have towards non-visible conditions.

Can you retrace your steps to how you reached your numerous diagnoses? 

I damaged my back in 2005 and the doctors diagnosed me with degenerative disc disease. They gave me some steroid injections and suddenly I started suffering with extreme pain all over, and within six months all of these marble-sized lumps started appearing on my body. Eventually, the surgeons finally started operating on them and today I’ve had 90 removed in over 34 operations. 

This was my first diagnosis of Dercum’s disease. No one knew about it, which was very hard; my friends and family all disappeared, thinking ‘well, you look okay, so you must be’. Finally, I found a doctor in America and kept pestering her, asking for any information about the condition or whether she could produce a leaflet for us in England and elsewhere to take to our doctors. She emailed me one day thanking me for all the work I was doing out there, going to Rare Disease Day at the Houses of Parliament and the banners and leaflets I had made up, and she had made a leaflet explaining the disease, which was brilliant of her, so thank you Dr Herbst.

Whilst I was trying to find out what Dercum’s was, I also had a lot of other issues going on and kept getting more and more diagnoses: when I asked questions on our Dercum’s Facebook page, it seems that if you get Dercum’s disease you will also get fibromyalgia, chronic fatigue syndrome and insomnia. 

I was also diagnosed with cystic fibrosis as I had a rare gene, and I know that has also caused lung issues, irritable bowel syndrome, and we are trying to find out what is happening in my stomach, alongside hiatus hernia, pancreatitis, and liver disease. 

About four years ago I suffered multi-organ failure, which was put down to cystic fibrosis; my gall bladder had to be taken out, my appendix is gone and I lost 21 kilos in weight due to the cystic fibrosis. I have managed to put the weight back on, but as all this is new to me I just take it as it happens. 

Alongside this, I thought I was going mad as my rib seemed to be bending outwards; I didn't want to go to the doctor but the pain was extremely bad, so I was sent for more tests and then I got the diagnosis of Tietze syndrome, which is actually when the cartilage in your rib cage is bending outwards. Steroid injections can treat it, but after my reaction to steroid injections in my back I have been told I’m allergic, so it’s just been left. 

I also suffer from migraine with aura, a rare type of migraine; I go completely and suddenly blind when it happens. I have tablets for this condition but you have to take them within five minutes of going blind, which is actually easier said than done. 

On top of this, my depression is very bad as you can imagine, as there is not a lot of help. 

Have your conditions progressed over time, and how has this experience been?

The conditions have got a lot worse. For Dercum’s disease, there is no cure apart from to keep removing the painful lumps over lots of surgeries under local and general anaesthetics. The cystic fibrosis is stable at the moment again, but my organs keep playing up: my liver suddenly goes all wrong, or it’s infections in my lungs, massive stomach problems or weight issues. 

The stress from them all and trying to deal with them alone has made the depression attacks even more frequent, yet you can't get help for them and knowing that you can die at any time from these illnesses is not helping. 

Have you been able to cope with the diseases better the longer you live with them? Do you have any strategies or activities which help you cope?

I’ve found that swimming helps a lot: the pain disappears and it’s a nice break from the pain, but it's a challenge getting there and having the energy to go through with it. 

One other way I’ve managed to cope is, when everything gets too much and there’s too many different jobs to do, I stop and take it one job at a time – that takes the stress down dramatically. 

As something of a unique case as a patient, what has been your experience of professional treatment and care? Do you think there is room for improvement? 

Unfortunately, I wish GPs and other doctors would be more helpful and better understand how it’s all affecting you as a person, because I don't feel like me anymore – I can't do what I used to, and that's hard.

The NHS are hopefully bringing out a rare disease card to make it easier when you need help and not to have to go through hell to get that help. The card will have all of your rare disease doctors, diagnosis information and what treatment will help with a big flare-up. It’s a backup to prove you’re not lying and to save you going through a lot of unnecessary tests. Even I have to go to casualty and they do blood tests and X-ray scans when all I need is anti-sickness meds, Voltarol and morphine through an IV and then the flare-up stops. But if you say that to the doctors at that moment, they think you’re a junkie.

Cystic fibrosis is the most well-known disease you live with; what are the main misconceptions you have encountered around it? Are there any common misconceptions in the other diseases you suffer from? 

With cystic fibrosis people think it's only the lungs that are affected, but it's not – it’s literally all of your organs, and the physiotherapy every day is hard; again, the swimming helps. 

When I'm on my crutches you get more help, but when I have stomach or wrist pain and can't use them, that's when people and doctors dismiss you as a fake, which is very frustrating.

Do you feel there is a general lack of empathy for people with ‘invisible’ illnesses like the ones you suffer from?

When you see doctors or need an ambulance or friends or family, they all look at you as if you’re okay because they can't see the illnesses and they don't understand what they are. I have to try and cope with it all and the stress makes it very hard, even to the point of wanting it over. For a lot of people with rare illnesses, the hardest thing is people and doctors saying you look fine, and not believing you until they actually read your medical diagnosis; it’s why friends and family have all disappeared, as you can explain it to them but because you can't do things like you used to, they don’t want to know. We might look okay on the outside, but on the inside we’re knackered. 

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