the hidden disease

The story of David

I was unaware of my Behçet’s and had accepted constant illness was simply my lot in life. The GPs were useless with comments like “you need to snap out of this malaise” or “you have a chronic pain syndrome and need help….but I am not going to refer you!” I was given disparaging looks and remarks by my doctor and treated as if I was a malingerer or hypochondriac looking for time off work. The seemed to forget I was self-employed so no work meant no pay! At one point the pain in my joints was so painful I was in tears. This is normal for me but I called the doctor for some pain relief. He asked me how long this had been happening to which I replied ‘years!’ He then said ‘well there is no harm in waiting a week to see me, I am pretty busy at the moment!’ He refused to see me any quicker so I instantly dumped him for another practice.

Then finally I saw a consultant who had experience of Behçet’s so they began monitoring me. I had various examinations and they were pretty certain it was Behçet’s and then another specialist concurred. I was put on Azathioprine at 50mg and have built up to 200mg. I had to have weekly blood tests but a year on I am now on 6 weekly tests.

The hardest thing is explaining to others just how bad it is. If you have a physical ailment people can see it and offer support or sympathy. Because people cannot see my ailment, unless I open my mouth and show them the ulcers, they just ignore me or assume I am either fine or putting it on. My family has been great, especially my wife who knows what I am going through. My social life is severely restricted and parties, meals out, whilst welcome, mean I generally have to leave early as I cannot always cope.

The azathioprine has helped, my symptoms are not as regular and not as a severe. Yes, I have bad attacks but generally, remission lasts longer and I feel much happier within myself.

It’s a tough thing to deal with but I am fighting it every inch of the way. With the help, support and love of family and friends I am keeping on top of it. Never judge someone by their external appearance, you never know what internal pain they are suffering!

Find others with Behçet disease on RareConnect, the online platform for people affected by a rare disease.