Whether you are applying for a job or have been at your workplace for a while, you may wonder whether you should tell your employer about living with TSC. This is a very personal choice and although there is no legal requirement to tell your employer about your TSC, you may find that talking to them about how TSC affects you could be helpful for you.

If you do decide to speak to your employer about TSC, you might find it useful to refer them to this page and also our guide ‘TSC and Employment: A Guide for Employers‘. You also might find it useful to share with them our ‘TSC and Employment: A letter for employers‘, which can help introduce TSC to your manager or someone else at your work.

Remember, that only by knowing that you live with TSC can your employer be aware of your needs and consider reasonable adjustments for you. (see ‘What you can expect from your employer’)

It is your decision whether or not you tell your colleagues about your TSC, but you may find that talking to them about how it affects you could create an open and more supportive working environment. For example, it may make it easier to take medication in the workplace.

If you do decide to tell your employer or prospective employer about your TSC, it is ok to not want everyone across the organisation to be aware. Your employer can only tell other people about your condition if you give them permission to do so.

Whether you are considered disabled as a result of TSC depends on how your TSC affects you, with the condition impacting on everyone differently.

Having a disability can mean different things to different people. Some people living with TSC may not consider themselves to have a disability, but they might still qualify for protection against discrimination if they have a long-term health condition as a result of TSC. This protection would come under the Equality Act 2010 (England, Wales, Scotland) or the Disability Discrimination Act (Northern Ireland).

Under the Equality Act, a disability is a physical or mental impairment which has a substantial, adverse and long-term effect on a person’s ability to carry out day-to-day activities. For example, if you have TSC-related epilepsy, having seizures would be considered substantial and adverse. You may still be protected by the Equality Act even if your symptoms are controlled by medication, as treatment is rarely considered when determining whether somebody has a disability.

Therefore, if you live with TSC and either:

• Consider yourself to be disabled as a result of the condition
• Live with a long-term health condition as a result of TSC (such as TSC-related epilepsy)

You might want to talk to your employer to see how they can support you at work.

As TSC affects individuals differently, the jobs or tasks that you might find difficult because of your condition may vary.

It is unlawful for an employer to use TSC as a reason not to employ you, unless there is a health and safety concern. For example, if the nature of the job is working at heights and you live with TSC-related epilepsy, this could put you and others at risk in the workplace.

You may be worried that an employer will judge you differently if you tell them about your TSC in an application form or during an interview. However, under the Equality Act, it is unlawful for employers to ask you questions about your health, including any previous time off work sick, before offering you a job. If an employer asks questions about your health before offering you a job that you feel are not relevant to the role, you can choose to ignore them.

There are a few exceptions where an employer can ask you questions about your health, such as for jobs in the Armed Forces and jobs where a health condition may cause health and safety risks (such as when working at heights).

An employer may also ask questions about your health at an interview in order to make reasonable adjustments at work. (see ‘What you can expect from your employer’)

If you are considered to have a disability under the Equality Act 2010 (England, Wales, Scotland) or the Disability Discrimination Act (Northern Ireland), your employer has a legal duty to make reasonable adjustments for you at work. Reasonable adjustments are something that your employer can do to help you at work. These might include:

• Changes to your working hours
• Allowing time for medical appointments
• Adapted or different equipment
• Additional training
• Additional mentoring
• Arranging a regular ‘check in’ with you

The adjustments must be reasonable to your employer and to you. You may find it useful to think of any reasonable adjustments that could be made to help you at work before talking to your employer. If there are costs involved with the reasonable adjustments, you may be able to access funding through Access to Work: www.gov.uk/access to work (see ‘What support is available for people with TSC in employment or seeking employment?’)

By law, your employer must provide a safe working environment and protect you from any possible risks to your health while at work. As an employee, you also have a responsibility to take care of your own health and safety at work. If your TSC could cause any health or safety risks to yourself, or anyone else, you must tell your employer. For example, if you have seizures that are not under control, you must tell your employer about this. Your employer should carry out a health and safety risk assessment to ensure that you can carry out your duties safely. They may also create a care plan, which will detail what you and your employer will do if you are unwell as a result of your TSC at work.

If you are experiencing problems in work, for example, being treated differently to your colleagues because of your TSC, or reasonable adjustments not being made, it is important to remember that there are things that you can do to help improve the situation. You could:

• Talk to people at work. This could be your line manager or Human Resources (HR). You may also want to confide in a colleague, who could come to any meetings with you.
• Keeping notes and records. This could include details of any conversations you have with your employer.
• Understanding your rights and any grievance procedures at work. These should be set out in your contract of employment and employment terms and conditions.
• Looking for third-party support.

If you feel that the situation has not improved despite talking to your employer, you may want to contact an organisation who can support you in negotiating with your employer or help you to make a complaint to an Employment Tribunal, for example Acas: www.acas.org.uk/ (see ‘What support is available for people with TSC in employment or seeking employment’)

The TSA Support Line is here to support anybody affected by TSC. You can contact our friendly team of Support Line Advisers 9am – 5pm Monday – Friday either by freephone (0808 801 0700) or email (support@tuberous-sclerosis.org).

We can to listen to any worries you may have about living and working with TSC, and offer support, information and signposting to other organisations who may be able to help.

• AbilityNet: abilitynet.org.uk – help for disabled people to use computers by adapting and adjusting technology.
• Acas: acas.org.uk – free, impartial and confidential advice about relationship issues or a dispute in the workplace.
• Access to Work: gov.uk/access-to-work/apply – govt funded scheme to help people with a disability overcome practical difficulties that may stop them from working. Available for people in employment, self-employed or unemployed and looking for work.
• Citizens Advice: citizensadvice.org.uk – advice services in the community for people living in England and Wales. Specific information on the website for people living in Scotland and Northern Ireland.
• Disability Law Service: dls.org.uk – free advice and representation for disabled people on specific areas of law, including disability discrimination, employment and welfare.
• Disability Rights UK: disabilityrightsuk.org – leading change for disabled people.
• Specialist Employability Support from Jobcentre Plus: gov.uk/contact-jobcentre-plus – intensive support and training to help disabled people into work.