Hi everyone. Iv had behcets for ten years, I'm finding it extremely hard to work full time or part time as i constantly get flare up and struggling with getting on. And as it hard to explain to people that always think I'm being over the top. This is stressing me out so much, I cry at the time as I feel I can't cope. Has anyone has this problem, I just don't know the solution to working, dealing with flare ups inbetween, and earning a decent living. ??
Peace and love to all. ??
I no longer work as i was flaring all the time. It is hard to be able to have good days i needed to rest in between. My behcets was so bad i was hospitalised nearly 18 months. I have just decided its not possible right now but who knows in the future i may be able to go back. Some people work part time so they get rest days. I know what you mean when you say you cant cope i always get a that when i am about to flare and during.
Hi I've had bd for about twenty years , I work but am finding it really hard , I don't no wot to do work wise as I work full time and more , I don't think my family really understand my condition or take it serious , to be honiest , I just keep going till I drop , I take a lot of medication each day , but the best thing .thats really helping me right now is having to talk to people who no exactuLly how I fell . Thanku so much x I'm not on my own x
Hi Sarah-Lou
I have brilliant support, I'm just tired of consently moaning at them, they hear it all the time!! I'm really finding it hard to find something that suits me, Im a hairdresser and that was too much for me, have tried reception work and supermarket work. What is it you do? And your not a wimp, people don't understand cos it's not something they can see, I always get told oh your ill again! So frustrating. 
Hi both
I feel exactly the same I work full time as a manager for DWP truely stressful, I try not to have much time off I go to work in pain every day with my ulcers below pain all throughy body can't use my right arm properly and headaches and like u it really peeves me off when you get colleagues phone in sick for the least ailments.
I wish I could afford to work part time or even give up but I can't.
Dezie, just think what you would like to do and ask yourself if u think you could do it, then look at your skills and transfer them into the job you want to do. You know you don't need experience for every job training can be given. Just think you have great customer service skills that opens a massive field of work.
Let me know if I can help.
Good luck sue xxxx
Hi Sue
Full time work must be very hard, well done tho, iv tried a few part time things and can't cope! I have just got to a loose end, I always think I can do something and then once I start I can't cope. Iv just started a new job and the rules are if your sick twice in 3 months you get sacked! That's a bit hard with behcets, I get 3-5 flare ups a month. No hope!!
Dez x
Hi dez
So sorry to here things are not working out for you. You say you started a new job however can only at risk of being dismissed if you have more than two days sick. When you went for the interview did you advise your employer that you had this condition and is this a permenant job, who is your employer. The disability discrimination act applies to your employer and providing they knew about your illness to starting work this law applies.
What job have you started and what does it involve.
Yes diz it's very hard to keep a full time job under our circumstances we are only allowed 7 days a year sick after that we get an oral warning and so in. I am in constant flare due to not finding the right drugs yet.
You know if I didn't have my mortgage I would quick work and go to live with my dad in Cornwall but I have to fight on I won't let this BD get to me.
Please mail me if you want to chat more or need further advice, what ever you decide to do will be the right decision. I am here for you if you need me ps were about a are you I am in Wiltshire Swindon
Take care Hun xxxx
Thank you so much for your help.
I didn't tell them anything when I started the job as I was told not to! But now I think I should. I'm working in a well know supermarket. My duties are ordering and filling selves.
I'm sorry you haven't found the right medications yet, what are you taking?
I live in Harrow!
Thank you for your support.
Peace and love x
Hi dezie
Sorry I sent a message hours ago but looks like it didn't come through.
This is a difficult one with you not giving the information on your application form. If you tell them they could dismiss you Hun, however I guess not every employer is selfless they may be sympathetic towards you I guess that may depend on what you say and how you say it, I have a good think before you make that decision, that's if you do. Difficult job for you though Hun stacking selves is really hard work, however re ordering stock is good I use to work in a supermarket ment years ago loved it.
What ever you decide u really hope it works out for you.
I had been taking mycophenolate along side colchicine with amitriptilin and meny more drugs for ostioporisis and thyroid but the mycophenolate side effects were priority bad flu systems and terrible cough leading to constant chest infections so been advised by BD nurse in birm to come off them so will have to wait till end of may before I go back for my app.
I have been inflare for two years now no break hardly from ulcers below joint pain and much more but what can we do we're at the mercy of our specialist.
More than happy to help anytime good luck Hun.
Hugs sue xxx
I try not to worry about the next day or the day after that.
I try and wake up and face the day as a blank canvas.
I'm a full time senior Manager but on Friday I simply couldnt go to work until later in the day as I had such an upset stomach.
When I did go in I was honest about it, and two other staff also had the same problem and had gone in later too. We actually had a bit of a laugh about it.
We sometimes get bugs and stuff like anyone else, then we have Behcet's on the top of that.
I do find going into work is good for me mentally, and the colleagues seem to like me an awful lot more since I became humanised by BD.
I think just try and put one foot in front of the other when you can, and when you can't....pull that duvet down and rest.
Love and peace to you all, its a tough gig! Jill
I also work full time and have just had another six weeks off ill from complications with Behcets and during this time I was also diagnosed with Diabetes Type 2. I'm about to go back on a graduated return to work and I am a Manager in the Australian public service.
I find the unpredictability of Behcets very frustrating, particularly when one day you can feel pretty good and the next week its like you've run several marathons particularly if migraines are part of your symptoms. Its not good for keeping to deadlines.
What works for me is to educate the managers and supervisors in the workplace without going into the gory details to give them an awareness of the disease. I've even sent them links to good websites which outline the symptoms to minimise the discussion of the ulcerations (I don't want to be talking genital anything with them).
As I'm the breadwinner and we have a hefty mortgage, I won't be leaving work until I retire and part time just won't cut the mustard in house repayments.
My immunologist has increased the dosage of Imuran which has settled the flares and makes a very big difference to the recurrence of ulcers too. The headaches and preventative treatment trials continue though.
Good luck and I hope that you find a resolution to your work life/health balance.
Hi Dezi;
Really hard to fight the disease. I remember the years of Behcet's disease is active. Impossible to forget the pain of mouth sores and genital sores. A disease that breaks the social life of the person. Site friends should know. 25 years in 2013 certainly explain the treatment of Behcet's trying to explain. In my country, I do not want to share it with the press. Helpless in the face of the intense interest of the patients stay.
Hi,
I feel the same too. I work 9-1 Mon-Fri and really struggle. I think people don't understand because most of the time they have no idea what BD is. It is'nt like having a broken arm and being in plaster that people can see either. Having genital ulcers defiantly is'nt something you want to talk about to work colleagues and people think if you have a headache you can take a couple of paracetamol and it will go away.
I had to take 2 weeks off work as was admitted into hospital for a week and then signed off the second week. My wages were £150 short this month which adds insult to injury. It is bad enough feeling poorly without finance playing on my mind.
I have adopted the take each day as it comes attitude and cross each bridge that I come across on the way. A lot of the time the brick walls are harder to get over lol x x
I too need to work as can't afford not to.
Your not alone Hun. C x x
Ur not , I get where u are , 😀
I have to see my consultant every three months . Is that normal ?
Yes, it depends on the nature of your progress and symptoms and other factors. I see my Immunologist every 3 months.
I stopped work two years ago as was constantly flaring. It was a very hard decision as I had my own theatre company and it left me heart broken. I also ended up having to go personally insolvent.
I was pretty much working part time as it was and somehow managing to keep things going. I could only do this on lots of pain meds and preds. Like you say it want a life.
I’m now on ESA. I’m permitted to do 16 hours a week. So a year ago I started ushering at an arts venue I used to work with. It completely destroys me physically but mentally it’s a lifeline. Last week I did 3 days of between 2 and 6 hours a day. It totalled 11 hours and it’s destroyed me. I can’t walk and am in so much pain. Mouth ulcers have appeared. I’m so fatigued etc.
I did it to test myself to see if I could actually work. I can’t! But there’s still that nagging voice of people judging me and personal guilt being on benefits. Our government is also very unkind to those ‘not working’ so I feel the stigma.
I will keep my job but go back to 4 hours a week maximum. I also try to do things like volunteer occasionally where help is needed but I’m not relied on. Both of these help the feelings of self worth.
What I would say is don’t wait until crisis to stop working. You know the decision. Explore all your options.
What I’ve realised that we are the lucky ones who have been forced into ‘slow living’. This is a life where money and comparison to others is less important. Self care, relationships, creativity and a moment to breathe take the place at the top of the agenda instead.
Please ask if there’s anything else you’d like to know.
Best of luck
V x
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