Behcets and work: New member, just starting to... - Behçet's UK

Behçet's UK
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Behcets and work

MidnightS5
MidnightS5
11 Replies

New member, just starting to come to terms with the possibility of living with Behcets. Still waiting for referral but my GP is pretty convinced.

My concern is going back to work. How do people manage with genital ulcers while in the workplace? At home, I can sit on cushions, sit with one foot up, use a sitz bath. But at work? Any practical advice would be gratefully received.

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Jaxxi

Hi! In the UK Behçet's can be classed as a disability because it is a long term condition that has a significant impact on you. The Equality Act gives disabled people the right to have 'reasonable adjustments' made in the workplace.

If your employer is large enough to have an HR department, they will be familiar with the process for finding the best adjustments for you. They are usually worked out by a series of interviews and follow ups. If you have a Union rep, they can accompany you. In my case I ended up with duties that involved less travel, a really nice cushioned chair to help with sore joints and arrangements to work from home during flares. It helped a lot.

If your employer is too small to have a dedicated HR department then you will need to see who is responsible and approach them.

Here is a page from the Citizens Advice Bureau giving more detail:

citizensadvice.org.uk/work/...

J

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GlastoGal

Hello!

This is a link to some information about working with Behçets from the Behçets.org website.

Towards the end you will see a further link for an Employers Guide to help an employee with Behçets within the workplace.

behcets.org.uk/working-with...

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GlastoGal
GlastoGal
in reply to GlastoGal

Actually, this is a link to the most updated Employers Guide.

behcets.org.uk/wp-content/u...

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MidnightS5

Thanks for the info. What about the practicalities though? How do peolle make it work? 1st day back tomorrow making me nervous.

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GlastoGal

I guess everyone is different you need to find the best solution for you with your employer.

I never had any issues working with my ulcers - I use instilligel for numbing.

Unfortunately I have been unable to work for almost a year now due to fatigue mostly and joint pain. Hopefully I will eventually find a drug which will give me as much relief from these symptoms as high dose steroids did but it is taking some time to find anything as effective.

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MidnightS5

Thanks. Good luck x

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rooser1

I wore sweat pants. I didnt tell my employers exactly what was happening, but i think from my business casual dress to sweatpants and no make up- they knew to just stay away.

If i was to be asked- i would just simply say that I have an autoimmune disease that causes ulcers E.V.E.R.Y.W.H.E.R.E. didnt get any flack about it. I did my job, made sure to take the breaks.

When you get home, sleep. Things will settle down soon if you pace yourself and allow all the rest.

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MidnightS5
MidnightS5
in reply to rooser1

Brilliant! Was back today and was ok I guess. Wore jogging bottoms but no one could tell. Told boss and the two people who would have to cover, everyone else nada. Boss was good- she organised for me to be office based for the whole of the week then we are off for a week anyway. Fingers crossed by then I will have steroids.

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Amy-Tenacious1

I wear black jazz/aerobic pants and just have a long enough short or jacket to cover logos. I dress up in a bun and boots with a bit of a heel (more comfy than high heels) and when I hold my head up high and smile with red lipstick no one will notice I have exercise pants or I’m off inside. I solve everything with lipstick.

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SCMW

Hi, so for genital ulcers, I found synalar ointment really helpful. Bathe every day after work to soothe the area, cotton under wear, and if possible if you can get on with a systemic medication, for me that was colchicine it calms things down. Smaller ulcers, short lived and less frequent. Best wishes

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MidnightS5

Thank you everyone for info and suggestions. Am now off for a weeks holiday so will use to rest and recover. Been prescribed prednisone for 1 week so will see how it helps. Just worrying things will never be the same again...

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