Coming out at work

This post has been written by Adrian,  a member of the Birdshot Uveitis Society.

Dear All,

I thought I’d write a post about the Disability Discrimination Act 1995 (DDA),  sharing  my own experience at work.

To gain protection under the DDA you must normally have a disability.  It is for you to provide the evidence that establishes that you have a disability.

The effect of a disability is not always obvious in the workplace. There are a number of conditions that can amount to a disability but aren’t always recognised, such as fibromyalgia, depression, dyslexia, etc.

Someone is defined as having a disability (for the purposes of the DDA) if they have “a physical or mental impairment which has a substantial and long term adverse effect on her/his ability to carry out normal day-to-day activities.”

Since the act was amended in 2005 , a person who has cancer, HIV infection or multiple sclerosis is deemed to have a disability from the point of diagnosis.  They won’t need to go on to show its effects.  Anyone who is certified or registered as blind or partially sighted is automatically covered.

If Birdshot isn’t affecting your ability to work and you can’t show its effects on you, then  your employer might say that he/she doesn’t have to consider you as having a disability from the point of your diagnosis, but only from the point it starts to ‘impair’ you.  I would counter this with the fact that progressive conditions amount to a disability,  if medical or statistical evidence indicates that they are more likely than not to have substantial adverse effect at some stage.  As Birdshot is a chronic and progressive disease your employer should err on the side of caution and treat you as an employee with a disability, even if they don’t have to make any immediate adjustments.

From the point of diagnosis, and before, I have been having appointments every four/six weeks at Moorfields and a week before each appointment I go in and give a blood sample.

When you are having such regular appointments it is difficult for your employer not to be aware that something is going on. When I received confirmation of the Birdshot I was immediately started on a high dose of Prednisolone and an immunosuppressant.

For a long time I had felt guilty about the number of appointments I was having and had got into the habit of disguising them through using my annual leave. The combined effect of the diagnosis and the Prednisolone was very stressful but I managed to hide my situation from my employer for nearly three months. There came a point however when I realised that I could no longer hide what was happening to me and so I calmly rehearsed my story and what I wanted to happen next.  I chose Friday late afternoon and met my boss, with the letter from Moorfields confirming the diagnosis and the medication prescribed. I promptly broke down and cried. It was hideous.

Once you have established that you have a disability the employer has to make ‘reasonable adjustments’ (failure to do so is a form of disability discrimination). This includes time off for rehabilitation, assessment, or treatment.

Later I was asked to state how the medication was affecting me. Below is essentially what I wrote but each person will be a bit different.In retrospect, it would have been more appropriate for me to have focused on the effects that the medication is having in terms of my performance in post. I have therefore summarised them as follows:

  • My sleep pattern has changed in that I do not get the same deep sleep as previously. It takes me longer to get going in the morning.
  • The steroids work by suppressing the adrenal glands which sit on top of the kidneys. This has caused me lower back pain.
  • I have had periods of feeling nauseous
  • I have periods of mental confusion and an inability to concentrate for long periods.
  • My spelling and use of grammar has markedly deteriorated (but I think it is recovering).
  • I have had periods of forgetfulness when I can’t quite remember what I was going to be doing.
  • Tasks I would have completed on the day I complete several days later if I have an energy slump.
  • I haven’t felt able to do as much  work in terms of slots as others, as working till seven and getting home at 8:30, has been really tough on the occasions I’ve done it.

On my current level of medication I would struggle to take on a role where I would be expected to initiate and co-ordinate projects, absorb a large amount of information quickly, plan training programmes, manage staff etc.”

Once you have disclosed to your employer you should ensure  that absences connected to your Birdshot are recorded separately from other absences.  Prednisolone and Azathioprine (in my case) reduce your immunity and make it more likely that you will pick up infections which  will also be longer lasting.  You should point this out to your employer.  I was told that the recovery time from an infection would be up to 50% longer than normal.  If I would normally be off with flu for two weeks, then now it would be three.

This matters because in a redundancy situation your employer could end up using sickness records as one of the criteria for selection.  If you have been off work a lot because of a compromised immune system your score on this measurement is going to look bad.  You’ll want to make sure that Human Resources factor this out so that you are not disadvantaged (or advantaged) in comparison to your fellow workers.

At some point I may well have to use Access to Work.   Access to Work is an organisation that can come into your workplace and carry out an assessment and help your employer to defray some of the costs of making reasonable adjustments.  It can also help you if you are unemployed or self-employed. This is a link giving more details.

I’m lucky in that my boss has been supportive (in a non-emotional practical way) and so has my company.  I am now considered as an employee with a disability.


3 thoughts on “Coming out at work

  1. Note from Rea: Adrian’s advice is really sound, and it is important to ensure your work place knows about your condition. This protects you into the future, should you have any illness due to the medication or to the condition itself.

    I too, suffered enormously from the side effects of medication. Everyone is different. For me, I was unable to tolerate the initial medication regime, and was turned down for an alternative medication regime by my PCT. I had to undertake an appeals process which took one year to complete, before being put on different medication that I could tolerate. In the meantime, my work performance suffered, and so did my health. Because I had kept my work place informed from the very start, they were aware of my difficulties, and made a range of adjustments and allowances. However, even with these, I was unable to continue working. I was referred to the Occupational Health Department, and was retired on the grounds of ill health. Although it is not a course of action I would have wanted to take if I had not been suffering from the side effects of medication, the benefit is that you are protected financially if you are in a work pension scheme (always check your pension schemes and get advice from human resources or from a reliable independent source). I received my pension early, so did not have to worry about bringing in money (apart from tightening my belt) whilst battling for new medication and trying to remain as well as possible on the previous medication regime. You may also want to think about whether to register yourself as partially sighted/disabled or not. There are a range of benefits that come with registration, but also a range of disadvantages. My work Human Resources Department was able to take me through all of these.


  2. Thanks Adrian, a very interesting article. My immediate Boss knows of my Birdshot and has never made a fuss about the number of appointments i have had. I have been through some tough times, mainly coming to terms with the fact I have this condition for life, and I can only hope it hasn’t affected my job too much. Hadn’t even thought about telling HR, maybe I should, this has certainly made me think. Carole

  3. Pingback: Reasonable adjustment for VI at work? | Birdshot Uveitis Society

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