When do you tell your job you have aps? - Hughes Syndrome -...

Hughes Syndrome - APS Support

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When do you tell your job you have aps?


I started a job 4 months ago for a team of eye doctors. They have no idea that I have aps. I am scared that something might happen to me at work and they don't even know I'm on blood thinners. I took a pay cut for this job because it is very low stress and I can work through my brain fog and do my job. We'll since I started, they have added a lot to my job and it is becoming very stressful. I'm kind of upset where this job is going. Anyways..When should I tell my job I'm sick and who do I tell first (co-workers, Doctors, office manger)? Also, I'm part time (with no benefits) and telling them I'm ill will probably cost me a full time job in the future. Any thoughts?!

10 Replies

Hi Kelly! My understanding of it is that you are not obliged to divulge information about a condition or disability unless you choose to, as long as it does not pose a threat of infection to anyone else. However, there are often advantages to declaring disability. Your line manager is the first person to approach, and they should carry out a risk assessment on you. They should be made aware of your anticoagulation, so that if you were taken ill at work, they would know what to look for. Remember, they are not allowed to discriminate against you on the grounds of disability - it is illegal, but they are allowed to discriminate against a member of staff who seems a little slower some days and gets stressed when there is no explanation for it, so there are many positives to owning up. This is based on my own experience of working for a college, and I was very well looked after as a newly disabled member of staff - till I went and had a stroke and couldn't work any more.

Other people may have more info for you on here, but basically...you decide when to divulge.

Don't worry and add to your own stress - take care of you, good luck with it all., Larraine x


Hi there, as said above, weighing it up, and doing what is best for you. Do you have some professional friends/relatives who could help you appraise the situation, away from the work place. I think to have some distance from it to talk it over with people you trust would help. But in the main try not to get stressed if possible, Best wishes to you. MaryF x

All that Angel and Mary have said above. However once you have had APS for 12 months (diagnosed) and have substantial and long-term adverse effects on your ability to carry out normal day-to-day activities, then you can be treated under the Equality Act 2010 (the old DDA)

I have attached a link that explains the definition of substantial and some changes that were made to the 2010 ACT. The bottom line however is that when YOU feel that your condition is starting to impact your work that may be the time to tell your employer. If you don't it would be reasonable for them to put down any behaviour (non attendance) to attitude etc so them knowing the correct situation then helps protect you. If they then refuse to take it into consideration you would have a case of discrimination.

Hope thats helpful.


HI Kelly, congrats on your job. Last year I have been through quite similiar situation... at first no one knew I have APS, not even my boss... But when I took the first aid and cpr training, the doctor advised me to wear an alert plaque around my neck. Do you know those plaques army guys wear? I have followed his advise and wear it no matter what. Thank God I haven't had any event that I would have to be hospitalized. It is cheap, it is safe,if something happens to you, people will see the plaque telling your name, blood type, that you are on blood thinner and a contact number of someone, like your partner or anyone... I put my Mom as my contact. The good thing about the plaque is that you can hide it under your shirt if you wear a long "chain" where you put the plaque. Another thing is... Relax and don't take things too personal. Not worthwhile

Have a wonderful Friday.. Beijos, Bia

I'd just tell you are on coumadin and leave at that.




Not such great advice given where you are but I always tell the companies I work for in my first interview. I am not interested in working for someone who doesn't understand...

I have never yet had a bad employer. I was diagnosed 12 yeas ago and had my kidney transplant 8 years ago, and I got my first serios job less than 5 months after my transplant.

I always turn it into a possitive - like, I will never call in sick unless it's true, I have great empathy and can use that with our clients and in stakeholder management...

I would susgeest you tackle it head on - they cannot sack you for having an illness but they also cannot help you! And if they know and you do a good job, there is no reason why they won't promote you in the future - people tend to be far more reasonable than I expect!

Good luck!


Thanks everyone for the advice! It sure helps to hear what everyone has to say. I'm very lucky to have thoughtful people like you guys in my life, that I can count on.

Take care..

I did tell my manager about my APS and I wish I hadn't. I think that she began to believe that I was less capable due to my illness. When it came time to restructure the department, my peer ended up getting promoted ahead of me and I was transferred to an easier, less stressful position. Perhaps it's better that I'm not as stressed at work anymore, but I would have liked to have been the one to make that choice and not to have someone make it for me based on their perception of my ability to handle stress.

I realize it's illegal to discriminate against someone based on a declared disability but I know it still occurs and many people, like me, don't have the time, energy or desire to file a lawsuit to try to prove that hey acted in a discriminatory fashion.

Thank you for your story! In one way I would like to say something, I think the Doctors I work for would take great care of me in regards to my eyes. On the other hand, reading what you wrote that's why I don't want to say anything. I do get scared when I get chest pain at work, then I start thinking should I place a sticky note on my shirt, just in case.

Thanks again!!

In my country i think you are obligated to tell your employer about eny illness that can affect your work. but I don't know where you live. so I dont know if it aplies to you. In my contact it saaid that i had to inform my empolyer atlast.

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