Will I ever have the energy to work full time ... - Behçet's UK

Behçet's UK
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Will I ever have the energy to work full time again?

Hi all. I'm Meg and live in Connecticut. I was diagnosed in 2011 with BD after 2 years of the 'text book' symptoms. I went of of work on disability in May 2012 for what I thought would be a month, two at most. Needless to say, I still am not back at work (OR veterinary technician) and am discouraged that I am beginning to think (or realize?) I most likely will never be able to return to my job in the veterinary field ever again. I am currently receiving disability benefits as well as federal medical assistance....which is fabulous because my IV Remicade infusions every 4 weeks are expensive! However, my general chronic fatigue and joint pain have actually worsened over time. 2 of my last 3 flare ups (which occurred over the past 2 months) left me with 20-30 oral ulcers each time....which again......worst I have ever had. Usually I would get 1-5 oral ulcers. Ulcerative colitis apparently wants to be my new BFF now as well.

I'm thinking I have to learn to accept that unemployment, SSI, financial hardship and chronic illness is my future. However, I have NEVER been one to give up....on anything. I don't want to accept that I will be fatigued and lethargic and in severe pain for the rest of my life....am I in denial?

Thanks everyone. I welcome any and all feedback


21 Replies

Hi Meg, No, no, no, it is not all gloom and doom. We all suffer differently and with our symptoms, some more than others some only a few symptoms at a time and some all at once. You must stay strong and positive then anything becomes possible. You cannot let this disease run your life. I have suffered Behctets for 32 years and it took 12 years to get a dignosis. Also back then hardly any doctor had heard of it let alone know anything about it. Also some of the symptoms I had I was told were nothing to do with Behcets whereas nowadays I see it is definitely Behcets. Diagnosis, treatments, meds, research and knowledge are getting better year after year. On my journey with BD I have managed to have 2 more children, divorce and remarry, and pop in and out of work at least part time. So it is up to you. Don't be afraid to push yourself when in remission, rest when you have a flare, but never give up!!!

Hope this helps.




hi Meg

i have just been told that the doctors are 99% chance that i have Behcet's but i am waiting for a diagnosis.

i am off work at the minute as i have had a flare up as they call it.

they first mentioned a diagnosis to me in accident and emergency where there just happened to be a doctor that knew all about behcets and he rhymed off a list of symptoms to which i answered yes to all of them.

then they sent me for blood test and so on, but i went there with ulcers.

you have to try and stay positive as i know where you are coming from when you say will i ever get back to full time work.

i work in a very busy office and going from that to sitting around doing nothing is driving me crazy.

i am not a person who can sit down and do nothing, i need to be kept busy. My family have been great and the doctors are trying their best, but they are only general practice gps so they don't understand Behcets at all.

i am on sick pay at the moment and cannot claim any benefits until i have had a diagnosis, although i don't want to claim benefits i would much rather be working.

we are struggling at the moment financially, but like everyone says, your health is more important than money.

i do hope you get well enough to go back to work in the future

keep positive

kind regards



Dear Meg May u get well soon Plz b optimistic. I have recently been got diagnosed of Behcet's. Although I have symptoms since my childhood now m of 31yrs. M on methotraxate 25mg colchicine Neoral 100mg n deltacortil 5mg. My skin lesions start getting better but thy appear on n off.My low grade temperature n body aches n fatigue r not improving even pains n fatigue r getting worse I also have joint effusion at my ankle which I hate most becz tat cause me limping n I feel very awkward but hundred thousands times thanks to Allah Almighty tat my condition is much than of urs n not suffring from any financial problem. My hot flushing is getting worse my think it might b getting worse bcz of neoral is anybody suffering from flushing I don't know wat to do? Anyhw Meg I ll pray for u May Allah Almighty bless u with health n wealth n may u live happily evrafter Ameen.


Hey dear, hang in there! When reading your post i thought you may be writing about me! Our timelines are practically identical! I believe I've had this since chilhood. We suspected in 2002 when i was in nursing school. Had a major flare, went on prednisone and pushed through. Things were under control in under 2 months. After that i would take prednisone if symptomatic and never more than a week and I'd nip it. In 2011 (sept) got my diagnosis, and started plaquenil. I ignored what my body was telling me until i woke up one day Oct 2012 and could not move....many different drugs and 9 1/2 months worth of prednisone later-still off work (although i did try going part time for 6 months in there but was a total fail!).

I've been off work since June '13 and keep waiting for something to "happen". I get the odd day where i don't feel so bad, but have this crushing fatigue and joint aches,skin ulcers on and off. I hate to complain as I know there is ALWAYS someone worse off than I.

Any new meds i can put in front of my rheumy at my upcoming appt?

Currently on Enbrel, colchicine , plaquenil and clonidine for BP.

I'm sending some good thoughts and vibes your way:)



This is a UK drugs pathway behcets.nhs.uk/images/downl... I hope it helps.


Thank you! I forgot to mention that i live in Canada.. -29 *C Brrrrr,lol. I will print it and show my rheumy! Merci ××



I am unfamiliar with any new clinical trials. I have tried numerous medications over the past 4 years. I will list them incase that's helpful. Prednisone as needed during flare, Plaquinel, Cholchicine, Humira, Imuran, Methotrexate, Remicade.

Good luck at your appt!



The only other meds I have tried are Humira (had an allergic reaction to it and it very similar to Enbrel), Imiran/Azathioprine which is a mild chemotherapeutic and it made me very nauseous, methotrexate which also made me nauseus however not as bad as the Imuran and IV Remicade which I still getting at the hospital Once every 4 weeks. its a 3 hour infusion and I am treating it well. I actually feel worse of I miss a dose. The only problem is, I am still flaring up constantly and febrile almost everyday. Which I had better results to share about the meds I have tried. Thinking a change in my medicine regiment will be sooner rather than later!


Hi Meg,

Just to echo the welcome and positivity above. Fatigue and cognition issues snuck up on me a couple of years ago and we adapted, as a family.

Everyone - Armodafinil and Modafinil? Ratchet, stick this in front of your GP. :) (Brand names Nuvigil and Provigil in UK, also available in USA Meg, don't worry but not sure of brand.)

I think they have been mentioned here before but I'm verbally hanging out the bunting and opening the fizz to raise awareness of their possible usefulness.

I tried Armodafinil (150mg) and frankly, I couldn't be more delighted. It's not a perfect fix but I'm not complaining; the size of my useful day doubled. Trying Modafinil (200mg) now instead for comparison.



Thanks to you too! I will do at my next appt. That is coming around the corner....will mention to you as well that i live in butt frozen Canada...don't find too much knowledge here, although I'm on my 3rd rheumy and she's by far the best. My trip th NYC in 2012 was a wasted one for a certain specialist, the shopping was superb though;)



Sorry Gen, I didn't know you were in Canada. I think the common form there is branded as "Alertec" but you can obviously get others. I hope you can get something and it helps; apparently there are a group of people who are genetically locked out to its effects.


Thank you for the advice! I certainly will mention it to my doctor this week!


Hi Meg,

Bless you - I totally sympathise with what you are saying. I'm 32 and desperately want nothing else but to be back enjoying my full time work. Up until a year ago I was managing full time work, admittedly I had to be careful and rely on my family to ensure I rested between shifts (I did ward work as a nursing sister.) I went in to a big flare in January 2014 and was told by the COE to take a month of work, unfortunately, a month became 9 months and I've had so many complications I'm now unfit to be doing ward nursing. I'm only just about managing to work part time and I really miss my "proper" job. Like you though, I'm a determined character - I never give up. I'm a fighter and I won't be beaten by Behcet's. It is hard to accept that we sometimes have to make life changes / compromises especially when they are forced upon us like through illness. Many people have said though that they have found their BD easier to manage when they have changed jobs / made lifestyle changes as it has helped them manage their BD too. Sometimes being too determined and pushing ourselves regardless (or being too hard on ourselves when we are so poorly) is not good for us! BD is a journey and it can take a long time, not just to get diagnosed but to find the right combination of medication for you. Don't give up hope. There are lots of people who have had terrible times with their disease but then have long periods of remission from their symptoms between flares, others have symptoms to manage all the time but do so very well and are able to manage work etc. Everybody and everybody's disease is different. With regards to your symptoms and the severe pain - is this from the mouth ulcers? I feel very sad when people suffer from severe pain, I feel that these days this should never be the case. I use a triple mouthwash solution (steroid, antibiotic and antifungal) that has been very effective for my mouth ulcers (also Azathioprine and Prednisolone systemic medication.) I do have to rely on more "heavy duty" pain killers for some of my other symptoms but I've learnt not to give myself a hard time about this. Is your Behcet's consultant approachable and have you discussed your concerns with them about your disease management and how you are coping? Are they willing to consider changes to your treatment regimen? There always lots of people on here willing to give support and advice. Anyway - just realised I've been "going on" far too long - I apologise but hope I've helped? I wish you luck and I hope that you find treatment that works better for you soon and, that you are able to get back in to work. It will happen, it might just not be when you think or you may need to think about a change in hours etc. X

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You're absolutely right, there is a fine line with being determined to fight and it causing so much stress that we flare up. I currently am trying to find that fine line, and will admit sometimes my stress does induce flares.

I am 31y/o and also have discovered that everyone's symptoms greatly vary. The longest I have gone between flareups is two months….However I usually flare At least once (more often twice) a month. As soon as the first flare is gone I get a few days and then it's back. I have started taking prednisone when I notice early signs and hopes to decrease the severity. It has actually worked a few times, and other times not so much.

I use a lidocaine swish and spit for the mouth ulcers. It is fabulous however it does not last longer than 30 minutes. It takes the edge off though and I cannot imagine not using it. I tried azathioprine but it made me very nauseous. I also had nausea with methotrexate. I get IV REMICADE Once a month. I also take more heavy duty pain ER for my joint involvement and a herniated and torn disc (L5-S1) in my back.

I love your advice on the fact that changing my meds but be necessary. I am actually going to discuss with my rheumatologist a change in medication regiment next week. I was very stressed last week, my grandmother passed away on top of numerous other things, and I took prednisone as soon as a oral ulcer erupted. Three days on prednisone and I woke up this morning unable to move, temp of 101, 30 oral ulcer and 1 vaginal, shortness of breath and excruciating joint pain (with right knee and hand swollen). Was so surprised that my flareup is so bad considering I have been on prednisone. Needless to say I went to the emergency room, received IV Solu-Medrol and actually feel much better now.

Gob bless and I will pray for your health. Thanks for writing! im always here to chat or if you need someone to vent to!!


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It is different for everybody. Fatigue is something that can be managed with a routine that suits. Acceptance of pain and illness, rather than ignoring it or fighting to transcend it has been more effective in managing it according to newer pain studies. Those patients who were stoical and fought their symptoms all the way, and tried to deny it was happening ended up scoring higher pain and needing more pain meds than those who accepted it, planned for it or sat out certain activities and took a low maintenance dose or as and when needed and planned life around it. I used to try to fight and ignore it and had the idea of being totally stoical in my head but also felt I was letting myself and everybody down if I chose to give up work. I got sacked in the end for the short term absences I needed for chemo, IV and other treatments. I would not have been sacked had I taken a block of time off.

I started off with several acute pancreatitis attacks and eye symptoms, and became seriously underweight. I still kept going to work in between hospital appointments but never knew if it was going to escalate, or calm down etc...the answer is you really do not know until it happens. I was eventually sacked for taking too many short term absences. So it is important to have a very good relationship with your employer and explain the situation, but you have to accept that they might find it difficult if your attendance becomes erratic and they cannot cover for you at short notice. For some employers they really do not want you back until you are 100% because it costs more to find a temp at short notice than it would if you have a six or twelve month block of time to plan around. Looking after kids or animals makes it difficult to work around with BD in some ways but it can be done. Most of us have problems because we did not have a diagnosis to begin with and kept being told it was nothing or would get better so we could not decide if we were ''allowed' to take time off. You always imagine a doctor will tell you if you are too sick to work, and give you permission with a solid block of time off...but they don't, they leave it up to the patient to decide and manage themselves. Eventually it was the schools doctor who told me I was too sick to continue and not my own doc, and it was the doc dealing with my sacking that switched sides paired up with my GP and changed my sacking to medical retirement as he felt it was totally unfair to be sacked for genuine illness.

However if you are the sort who does not give up, and pushes themselves, you can inadvertently give yourself stress and end up panicking about not meeting your own high or unrealistic expectations. This happened to me and I got sicker and sicker to the point the Head teacher would not have me in school, scared I might actually collapse or die on school property or cause myself to worsen. I LOVED my job as a sign language interpreter in a school or the Deaf.

Anyway, I did have to retire, and got my ''sacking'' changed to ''medical retirement'' and in my head, I kept thinking I would go back to it but that was in 2001 so now have accepted I am not going back there, but since then I have found interests and work that I could do at home (knitwear designing and authoring of pattern books) but had to learn pacing.

Actually, if you can ask to be referred to a pain management team and then discuss strategies for pacing or go to psychology sessions it really can help. People in certain types of stressful jobs when they feel tired push themselves more, and it helps to learn pacing techniques to avoid the stress that can trigger immune responses to flare up. For myself it meant setting very realistic deadlines for work and I have turned away a lot of work in the past because I could see myself getting all workaholicy and drawn in again. Some of us respond to illness by fighting it off mentally and that sometimes comes with a lack of acceptance that this has happened, we need to adjust, reassess and learn to pace ourselves.

Pacing can also help you socially too. I have to say to my family, if we spend a day doing something strenuous then the following day I must have off and rest. If I get driven to the park with my dogs and enjoy a bit of fresh air, I have to put my foot down about doing that followed by shopping in Tescos, followed by visiting someone then having to go out in the evening.....I can only do one event once every two days...we are all different.

If you are the sort of person who will sit around worrying about work, feeling useless for doing nothing, some psychological adjustment does need to take place. Firstly ignore the pressures of society, we are all obsessed with ''what do you do?'' rather than ''what sort of person are you, and what interests you''.

For me, finding a hobby supporting a charity by designing things for them opened doors to publishing and it did mean even if I only completed one job per month, I could at least have an answer to the nagging ''what do you do?'' question.

Sadly for me, I have a disability in the arms

So my reasons for not working are due to permanent disability on top of Behcets...but this proves that we are all different and it is a huge spectrum as inflammation can happen anywhere in then body. I have lots of inflammatory bowel symptoms and the pancreas flares up.

I think of all the symptoms that make us working types upset it is the tiredness because enthusiasm for a busy job means we used to have boundless energy we just found and dragged it up from somewhere. I have always been a little run down and tired since childhood so actually adopted an attitude of all guns blazing and busy, busy busy because I knew if I stopped and sat down, especially in the afternoons, I might just snooze off or not be able to stand up. But this sort of hamster wheeling eventually catches up with you.

My symptoms were so atypical of Behcets in some ways, especially text books that I never knew what to expect. I had to tell myself that the reality is what I have to deal with today, try not to carry the baggage of yesterday, and try not to speculate about the future. So I can say for me personally, today I am not well enough to work, I cannot go back to knitwear design or sign language realistically, but what I can do is keep an active mind. I read about 50 novels a year and social network about them, I watch films, get involved with supporting greyhound rescue, I do watch a lot of TV but I choose to stream programmes and films that are what I really want to watch, I am in to my music....and none of this is bringing me an income AT THE MOMENT but I can't guess where I will be. I try not to think or feel trapped in the reality of today.

I can go for days without even thinking about Behcets Disease despite the symptoms being there, eventually I just bored myself stupid trying to note everything, talking to docs about symptoms, explaining to friends and family and just constantly being aware of every little thing.

This might sound horrible but it is actually a good thing; my BD has become so much a part of me and the way I am that I hardly register the actual name of it and no longer mourn for who I was before, and don't dwell on it as much. I do ask questions about individual symptoms and did go through Remicade and a ton of drugs, many of which I felt were not helping but had to continue under doctors orders (Infliximab/Remicade I reacted very badly to like a tiny minority do sometimes, and it nearly killed me off when I picked up a simple infection but my body was immune compromised). Anyway I finally stopped going around hospitals for my BD and asked my GP, can I not just ignore the reasons and treat each symptom as and when it happens? And he said I could, we have known each other since 1991. he knows I have a hospital phobia and cant watch anything medical on TV as it is upsetting. So, if I get a symptom, we acknowledge it is probably BD and then refer me to a specialist just for that symptom.

Ideally a person should be under one consultant in a centre of excellence for that field but I cannot face it. But even if you attend hospital regularly it would be good to ''just be'' find what you can do

There is a possibility that you might get back to work, and you might find a way to pace your life to avoid getting so tired. And perhaps if you did vet work, you might find you cannot take on a full time job but a small part time one....when you feel like you are in remission or improving, you can always find that sort of work perhaps through an agency as a relief member of staff? And if not that, perhaps get involved with animal charities and help out there to feel useful. It is important as well to manage your disability benefits. I did not claim those for such a long time because I thought I would work, and then I was doing some knitwear design but was earning about £1000 a year at most which was difficult. I did have to go on full time Employment Support Allowance and am not working or anything at the moment.

However, we still fostered a retired greyhound for a short time and all he wanted to do was snooze on top of me in my pjs, so I was doing my bit snuggling and watching TV...


I agree with everything you said. I have found acceptance in that I have this disease and need to take every day as a gift. I have seen a therapist/psychologist as well as pain management and continue to do so. I'm not sitting around feeling sorry for myself every day of my life. I donate my time to non profit groups, craft daily and sell a few things on Etsy, make YouTube videos and much much more. Due to my immunosuppression my doctors won't let me return to work anywhere. My only options are to 'work' on my good days from home. You're absolutely right about stress and anxiety causing much more harm than good.....but I cannot help but be anxious when each month I am not sure if I am going to be able to pay my rent. I love the hobbies I have discovered since my time off of work, but at the end of the day these hobbies are not going to guarantee that I have a roof over my head.

I certainly do not feel useless and no longer worry about work. Yes, I worry about how I am going to make ends meet each week and wish I could return to veterinary medicine but know I can't.

I think I need to discuss a different treatment plan with my rheumy because my quality of life right now, with all financial stress aside, is what I cannot accept. I cannot imagine the rest of my life feeling like Inhave for the past 2.5-3 years. I'm miserable!

In the meantime, one day at a time is my motto. Staying busy for my mental sanity is easy, eliminating financial stress however is impossible.

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Meg I totally get the worry over finances. I have a mortgage and negative equity with outstanding bill of a min of £35000 upwards due in 2016. My partner has been laid off 5 times with long periods of unemployment and I have to pay carers around £15 per hr plus agency fee if over the 1hr or so I can pay for that out of £20 per week disability allocated for my arms. Our house is squalid and falling to bits, OH has spinal problems. My parents died, my brother is estranged and I have 1 friend who lives about a 4.5 hr drive away and she has young kids to worry about. When my father died, half his estate should have come to me and he would have left enough for adaptations to this house esp bathroom as my hands no longer work and arms fused at an angle So shortened. I cannot reach so need A specialist bathroom. But Dad got married One week before he died to his carer, she contested my share and took everything. Then on top, we still borrowed money on credit cards to give to a builder to make very basic adaptations, and he ran off with it. We were advised not to take him to court as it would cost a lot and if we won, he still would not have to pay as he had no assets and was bankrupt now. He defrauded us, took thousands for bathroom equipment ordwred from a Travis Perkins brochure but when I Contacted them they had not sold anything to him. .cheeky beggar charged us storage too! Police would do nothing saying it was civil. Then my dog got cancer and we ran up a £7,000 vet bill on our cards due to surgery and chemo, but found out from a lab that in fact our dog never had cancer in the first place and did not need treatment, and he died after surgery to remove lung lobes that were not cancerous. Last year, found out my eyesight is failing due to cataracts but NHS will not do surgery citing BD as the reason but I need glasses with expensive lenses plus dark glasses...apparently due to a rare one sided eye disease I have in both eyes causing paralysed pupils they let in too much light leading to cataract and macula scarring my eye prescription is changing every few mths. NHS help towards glasses has been rubbish and so costly new glasses can only do every 18 months

So yeah, I have had money worries since 2001 when my sick pay and job finally went. All I can advise is worrying about it does not make better. We survive from day to day. I am tild if we become homeless we will not get assisted housing but will have to live on proceeds of house reposession buy back until we run out THEN can perhaps get assistance.

One thing I do wish is that we never bought our property because we cannot get assistance in benefits for rent and our 100% endowment mortgage is up in mths meaning we have to pay off whole cost of property with huge shortfall but owning property makes you look rich on paper...

Sorry for rant but wanted to make clear that my apparent acceptance of BD and coping mechanisms are not easy and its a struggle to get the OMG what is to become of me out of your head. Strangely, feeling suicidal over it back in 2002 helped enormously. I decided I could not continue to stress, and thought oh well if I lose the house or cant cope, I'll just top myself to clear the bills..but as we didnt lose it, and partner has found odd jobs in between redundancies we sort of managed and irresponsibly ignore our future position so the need to jump off a tall building just did not arise...

Doctors as well just always assume we have family to bail us out or just dont get that they need to contribute more than diagnosis and list of meds to help us out. One doc telling me I will never be able to use hands for sign language, or knitwear design again suggested I get a job in a shop or something instead..he hadnt thought about what help you would be as a shop assistant without using hands. This doc works in a centre of excellence for BD too. And if they were more supportive with their prognosis more of us could get benefits when we need care. The first year I applied for DLA for my arms, I spent ages over forms sending medical stuff in, they refused to accept type written forms too and I can only use voice to text so,require a handeriter but they wrote to a G P asking him to describe what was wrong and how the disability affects me...he wrote one single word in the huge blank space which read "NONE then signed the form and I got turned down flat. I had it out with him and he said he thought they were going to phone him for info if they wanted to know any more that badly so did not understand he had totally undermined everything I had claimed. Docs also think a disease name, list of symptoms and drugs gets you benefits BUT they want a doc to explain how it affects your abilities and saying BD is not enough. Next time, he guiltily made a house call with his form and filled out every single section to correspond and support my sections and I got awarded £20 per week for arm care support for those jobs I cant do, it is not enough but it took years to sort out.

Worrying about rent is horrid for you, and I can totally get how wondering if you can get back to work is going to play on your mind. You cant plan for it. It is not like being able bodied and unemployed, thinking oh well if I cant get back to vet work at least I can,start applying for more basic jobs...sadly if BD stops you from working, you have no option but to stop work.

Take care over your craft and etsy sales income. I know from experience taxes and being covered for that can be tricky so keep accurate books and receipts for all materials expenses and then you will only pay tax on profits despite claiming it all. I also heard that now, if you sell in EU online you may need to pay export taxes as a supplier.

You could also be worrying constantly over sales of stuff you do for a hobby affecting not only tax but also your disability status. Even when you do stuff for charity you are liable for tax if you sell it then donate proceedings. Only a charity that is VAT reg can claim back taxes paid on your sales, otherwise you pay the tax as a supplier.

For many years, those ill or disabled unable to meet bills would have no option but to sell off their old clothes, household goods or crafts for pocket money without even costing in labour. To a certain extent the govt turned a blind eye to Paypal, Ebay or Etsy earnings thinking it insignificant. Then govts in Europe realised that there is tremendous revenue previously untapped, so have written many reports and carried out audits. Now that the sick and disabled no longer have an option of claiming therapeutic reasons for a few hrs worked per week, the govt also keeping much tighter reins on income passing hands on ebay, etsy or other websites can make it difficult for people who want to sell for pocket money and have not kept accurate books to show material costs and profit and you dont want additional worries of "have I paid enough tax ?"


I'm terribly sorry to hear of your financial hardships and encounters with crooks and frauds! I assumed, and somewhat hoped, someone experiencing a similar situation to me would reply… As to selfishly make me feel less alone. I now feel badly for having that thought, and I'm sorry you are in the same situation as I am. I hope to God that with time I can become as positive and strong as you are. I want your optimism on life to be contagious. I will pray for you and your partner.

I completely understand that doctors just assume we have family to help us financially, and emotionally. I do not have that luxury either and sometimes it's frustrating and embarrassing to have to admit that to them when frankly, it's none of their business.

Thank you for the tax advice. I have meticulously take an extremely detailed notes of every sale. That will not be a problem for me fortunately.

God bless you. I truly admire your strength. Hopefully one day I can be a small fraction of as strong as you.



Dont feel bad about asking for support because that is what we are here for. But also, dont assume that what happened to one person is bound to happen to you as BD is not a disease that manifests itself in exactly the same way in each person; it is hard to know that until you meet a few people with it and are able to see the vast range of different levels of health. Being a rare syndrome you probably will find it difficult to meet hundreds of us though. I have come across only two probable cases in real life, one was in a wheelchair and had a stroke which may have been down to smoking rather than BD but she did not appear to have any ulcers, another lady was leading a fairly normal life with a child, and occasional fatigue from caring for a kid with outbreaks of mouth ulcers and genital ulcers couple of times per year. All I could think was I am nothing like these two.

You will come to some acceptance through seeing the pattern of your own symptoms recorded over time. You are probably going to be less worried over money than you are now. You could try different organisations to find out what happens once sick pay is no longer coming through. Just to prepare for the worst but may never need assistance.

I think as well that those people who have BD that is totally under control with meds that work and minimal symptoms are not going to be coming on this forum really unless they have a particular interest in helping others. So you might panic by reading all the worst scenarios and not hear of the good outcomes because those well people are busy enjoying life and keeping BD totally to the back of their mind. They might have no desire to share.

Also it is worth remembering that just because you have BD does not mean you are immune to other illnesses but we can all have a tendency when new symptoms arise to ask if it is to do with BD. I get endometriosis, eczema and asthma and have a hiatus hernia coming on and am sure none of these is directly BD related.

I really hope you can find your own pattern Meg and through time worry less about finances. I am pretty sure that my lessening worry has less to do with my stoical personality traits and more to do with a particular nerve drug I take. Apparently I am worrying in sleep according to ENT as I have ground down teeth and bite marks on cheeks and tongue! I do get anxiety dreams or insomnia, hence diving into books and films a lot to escape. Have found though that taking Pregabelin has entirely changed my daytime attitude for the better although tiredness has increased.

When you do talk to docs, dont be scared to tell them your biggest anxieties over work and importance of documenting that, as well as the worst case scenario. You get less help if your doc writes that you are most likely going to be symptom free in the future. Doctors have a habit of writing down best case scenarios in order to keep the patient from worrying or experiencing prejudice over it which might not happen anyway but that does not help you to get financial help. I had trouble at work because a gastro consultant said my acute on chronic attacks of pancreatitis was temporary and nothing to worry about and would last only 12 mths. When 12 mths was up, the Head said I thought you were going to be better by now? And they got fed up of waiting. Also, without a correct diagnosis, it looked like I was a hypochondriac with loads of symptoms apparently been unconnected. If the consultant had been more accurate as well as realistic, I would have taken a block of time off and be less of a nuisance flitting in and out of work and I would at least have been prepared for the worst. Perhaps you will be fine to return to work, but it does not hurt to be prepared for not doing so just in case.

Glad that you have worked out your tax; it is less complicated probably outside of the EU at the moment as you probably fill out detailed IRS forms whereas here, a lot of people on PAYE automatically calculated, think sales making their total earnings less than their tax threshold means zero extra tax, but for some kinds of online sales, sold from UK to non EU countries, requires the seller to pay 25% or more of the price to HMRC. I found this out because I sell a pattern for greyhounds and collect money and pass all of it to greyhound charities, but from Jan am expected to deduct a quarter of it or more depending on which country bought it even though it is for charity and not for me personally.


Hi Meg - I'm in New Jersey!! Diagnosed three years now with BD after over 20 years of strange symptoms. I am fortunate that my symptoms are pretty well controlled on 150 mg a azathioprine except for pain, fatigue and shortness of breath - right now. I think there really is not a single great answer to your question especially due to the variability of the disease in each individual as well as what can be its episodic nature. I have always faced it like this. I do what I can - when I can and try to listen to my body and be kind to myself. I am a physical therapist with my passion being manual therapy as well as a myofascial practitioner and massage therapist. So unfortunately it has become difficult for me to perform my job especially to treat 8 patients a day manually in my own practice. I chose to close my practice and when it became available I jumped on a part time job that I work three days a week with benefits and do less manual physical therapy. Those days though are exhausting and as I am a single mom, it can be hard to even stay awake after work. I weigh everyday as it comes with Hope being my best friend, hoping to get to a place where I feel like I am thriving not just surviving. Doctors and family think at times that being on disability would be the best for me. I think our challenge with BD is to become creative with our careers and then to see our potential for other careers as being viable options. However, disability remains an option. Just remember, your first priority and JOB is to your health.


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