I'm sorry to hear some of you are so young (I'm now 55) however it looks like some of you are getting diagnosed quicker than some of us older ones.
As pointed out quite correctly by the Behcets Syndrome Society any advice on this website should be first of all run past your GP or treating specialist. However I'm finding the comments invaluable - either to know that we are not alone, are on the right track or fresh ideas out there.
Now, my bit of advice (from an older person) - over the years I've had to make a couple of career changes that I hadn't really intended, however looking back I'm quite happy I did.
I'm now a trainer - teaching business administration courses via correspondence. You might like to look into how you can keep earning a living and doing the kind of jobs you enjoy that doesn't take all of your energy. (Might mean doing a couple of courses).
Because I don't fit into a neat category I haven't been able to get disability benefits (yet) although I did get the disabled parking sticker (worth it's weight in gold).
I'm lucky enough to be working from home and can work around appointments and bad days (as well as helping out looking after aged parents). We 'joke' about it and say it's quite sad that my 76 year old Mum looks after me more than me helping out.
Hope that helps - anyone with ideas on how to keep earning a living?
Lesley
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lesleyg
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I had to retire from my beloved midwifery because of the Behcet's and that was both a psychological and a financial blow. I think the psychology of giving one's work involuntarily is a huge area for research and study. All I can say is that for three years I didn't know who I was any more because so much of me had been tied up in my 'midwife' persona. I was Di the midwife, something that overrode both Di the wife and Di the mother of three. I have no quick or clever answers to that particular dilemma; all I can say is that eventually you do remember who you are! Perhaps that's not such a bad thing either...
As for the financial burdens of not being able to work outside of the home - I've had a couple of 'careers' since leaving the outside job market.
My first recourse was to join a freelance writing agency; I'm lucky in that when I put my mind to it I can write very well; I discovered though that all that is needed to get some types of writing work is a basic level of literacy. I signed up with an online agency - Elance - and within a couple of weeks I had work coming in. I paid a minimal subscription but was soon earning enough to make it worthwhile paying the 'premium' subscription. Eventually I acquired a stable of clients and left the agency to work solely for myself. That paid the mortgage for around three years or so. NOTE: I am not recommending Elance, I'm simply saying that is how I started. Just google freelance writing and you'll find hundreds of agencies - check them out before signing up or spending money!
After a while the concentration required of me for writing so many articles became too much and so I let it tail off. However, we still have a mortgage to pay. I resurrected some old skills and learned some new ones - silversmithing - and nowadays I am a reasonably successful jewellery designer. This fits in with my life much better because I only work when I am able. Unless I have taken on a commission there is no deadline and when I do take on a commission I give a fairly long delivery estimate so that any health blips are covered.
Just recently I had an emergency hospital admission and my time as an inpatient plus recovery time meant I was struggling to complete around 6 commissions. I was entirely up front with my customers and, without exception, they chose to wait for their order rather than cancel it and move elsewhere - I found that heart warming and it urged me to continue.
We all have different skills and aptitudes but we are all good at something - the secret is to find that something and turn it into something more financially rewarding. Off the top of my head I can think of: photography, textile crafts, paper-crafting, drawing...
There are plenty of markets from which to sell your handmade items, the major one is Etsy - which is where I sell some of my jewellery - but there are myriad others. Once again, a quick google should throw up all sorts of interesting sites.
Hope that provides some food for thought...
Oh, I'm not a youngster either, by the way. I was 58 on the 1st of this month (August)...
What a wonderfully positive reaction. It is so important that we do not Behcet's get the best of us. Well done with your career changes. I used to be a nursing sister, but had to give that up, so I started working for a government agency, half from the office and half from home. It was tremendously rewarding and although not my first choice it was also very fulfilling. I retired at 63, because the company did not want me lose interest in a very important contract with the far east. I also had plenty of time to train my successor. Now I am retired, there is so much to do. I hardly have time to turn around. I am very lucky in having a loving husband who is good at looking after me when times are bad, and good at letting me have a good time when times are good.
And that's another important point isn't it Sue - having the support of somebody that genuinely cares. I am lucky in that respect too; not so much in the allowing me to have good times when times are good mind you, he worries that I'll start it all off again. When times are bad though I couldn't ask for more. I'm a very lucky woman indeed.
I am determined that I will not be identified by my medical condition but by who I am and that's not always easy. I sometimes feel very angry with the disease because there is so much to do, so many people to meet and so many places to explore. The anger doesn't last long though - I just teach myself something else!!
It's good to hear that you're also managing to have a life outside of Behcet's.
I feel a positive attitude is very important (fortunately my personality is a bit that way inclined). I must admit I'm struggling trying to work out how I can last another 10 years to 65. How old were you when you were diagnosed?
Hi Les - It's difficult to give you an exact age because it seemed to be going on for a while and it's all confused in my mind but it would have been around the age of 51 or 52, so six or seven years ago.
I struggle with that thought too. Okay, so I work from home and I have it pretty soft compared to those who have to go out to the workplace. I still have to work though. The mortgage goes on until I'm 65 and my husband is exactly 10 years older than me. He still works at the moment (despite the fact that he took early retirement 12 years ago - Behcet's doesn't just affect the patient does it
The thing is, he can't work forever and it makes me feel guilty that he's working now at 68. Okay, so the retirement age is going to rise in the UK but it didn't affect him and he could/should have retired 3 years ago.
I struggled on much longer than I would usually have done with the writing business because that was the only way I could earn enough money for him to be able to retire. However, as my concentration deteriorated, the stress of it became worse and worse and I finally sort of imploded. The silver brings in some money but nowhere near as much as the writing - it's high end stuff, not pocket money and, just in case you hadn't heard (tongue very much in cheek) there's a recession on.
All I can say to make you feel a little better is that now you are part of a community that understands now you feel, both physically and mentally, things might be a little easier?
That is exactly what I was getting at. You've given me a few good ideas as well.
I find the concentration a bit of a problem and I definitely didn't inherit any of my father's artistic talents. (I'm colour blind and can't even draw a stick figure!)
I would very much like to 'retire', but at the moment it's not an option.
Also, a staff member from one of the community colleges I teach for advised me not to stop work for more or less the reasons you stated above - I have been defined by the courses I've taught and if that is taken away psychologically it could be worse than struggling on.
Oh Les - I do wish that staff member had warned me first too! It would have made no difference of course, I certainly wasn't 'fit for the purpose' of delivering babies but forewarned would have been forearmed!
It's interesting that you say studies should be done about the psychology of giving up work. One of my earlier jobs was secretary to a professor of psychiatry. Sadly my old boss passed away about the time I was diagnosed. I'd love to have had a 'chat' with him now. You're also right that it probably wouldn't make a lot of difference - there is no way I could handle a 9 - 5 job. Anyway it looks like you have come out of it quite well (on earning a living)
I've always been a believer in the old adage about one door closing and another opening and, just sometimes, enforced change is the kick up the bum you needed anyway. But I wasn't ready to give up my midwifery (although I was more than ready to give up the NHS). Now, some 5 years later (or thereabouts), I'm a happy bunny. Currently I'm working on enamelling as a way of adding colour to my silver. It's a steep learning curve but I'm doing it at my own pace. When somebody buys something that you've made with your own hands (and I make everything - even clasps and chains) it does give you a good feeling. Never be a millionaire though
Couldn't agree with your opening sentence more. We all hate change but looking back I am pleased with the different paths.
When I was finally diagnosed with Behcet's I was in the best position possible - working from home and the hours don't matter. What I have to do now is lift my game a bit as I'm down to about a third of my normal earnings.
Your post has inspired me as well as the fact that I feel I have a bit more energy.
Les I was a software engineer doing high level security for a large company when the BD first hit. They were kind enough to move me to easier positions but the disease was not going anywhere. Eventually they layed me off which in turn helped me start my own small business.
How lovely to read so many positive posts. There are a few things I would like to add - which some of you will know but others will hopefully find useful.
Giving up the job you do now isn't necessarily going to have to be a permanent move. I feel it's not stressed enough that even though BD is a dreadful disease and can make us very ill, it can also go into remission, patients can be symptom free for many years and in many cases it can be controlled by medication and good management and people are able to continue or return to work and live normal lives within the context of the disease.
This is apart from looking for other opportunities and changes of career, which is of course a great thing to do.
If you work for a large company or organisation it's worth a chat with Human Resources or whatever your Company's equivalent is, as I believe they are obliged to offer an assessement of your needs and abilities - possibly via Health and Safety, and you may be able to come up with an agreed work arrangement. e.g. part time, from home, x hours per month flexi to suit your health and so on. If this is not possible you at least have confirmation that you tried and no solution was found, which can help you with your next step.
IF your income is compromised to the point where you feel you cannot manage and cannot work at all, or enough to survive, then have a look at benefits. The Society can give you advice about this. The 'proof' that you tried to stay in work will help with your claim.
As above, remember that starting benefits doesn't mean a lifetime of benefits, depending on how your health and circumstances change.
None of us want to be defined by our condition and giving up a career can compound the feeling that we are. It is a loss and sometimes we need to allow ourselves time to mourn that loss before we can move on, in order to stop it being somewhere inside us waiting to jump out when we are feeling low. Talking this over with a GP, support group, helpline, even a counsellor can help with this.
Ultimately we are not others' definitions of us and are not the sum of our condition. The positive outlook and choices made by those posters above are excellent examples of how to manage.
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