As a teacher, you understand that feeling of complete exhaustion more than most, particularly in the last week of term when you are crawling towards the holidays and feel like you could sleep for a week. Most people have also probably experienced the pain of a pulled muscle following a long run or that cartwheel you really shouldn’t have tried…

But these are not random, infrequent sufferings for me. These are daily occurrences. For I am living with an invisible genetic disability called Ehlers-Danlos syndrome.

When I was diagnosed, there was a period of identity crisis when I genuinely struggled with who I was. All the things I prided myself on - being organised, having impossibly high standards, being active and social - started to slip. This included being a teacher.

A partial shoulder dislocation meant I was unable to write the date on the whiteboard or complete my marking. Exhaustion meant I was unable to do my job effectively and so a work-life balance completely disappeared.

Emotionally, I was less able to cope with the demands of teaching, dealing with parents and with the general bureaucracy of being a teacher. Additionally, comments such as “Is there a cure?”, “When will you feel better?” and “You don’t look ill” further compounded the emotional experience of dealing with my diagnosis.

Suffering in silence

What I have come to realise, though, is that I am not alone. There are more than 11 million people with a limiting long-term illness, impairment or disability, and the majority of impairments are not visible. The chances are that your school has someone with an invisible disability. They may be struggling, even though you can’t see the disability.

As teachers, we are familiar with how good children can be at hiding things and keeping secrets. They are often afraid to admit they are struggling, afraid to ask for help. They might be unaware that they are experiencing learning differently, and often do not want to be labelled. The same is often true of adults with invisible disabilities; they learn to hide difficulties, and can be scared to speak out, to ask for help or for adjustments to their work. But what support is there in schools when teachers do speak up?

Anxiety or fatigue can be dismissed as just ‘part of teaching’

I posted on the TES forums to seek out the experiences of others in my position and there was a wide range of responses, positive and negative. The most common complaints, regardless of the disability, were those of increased fatigue and anxiety around job performance/coping.

From the responses given, it seems that the most important thing that schools can do is to listen and accept; negative experiences occurred when a person’s school dismissed their condition as “part of teaching”: this was particularly prevalent in instances where the disability was mental, rather than physical.

Welcome support

Schools need to be open to listening to their staff and must take them seriously when they disclose a condition that affects their ability to do their job.

Where schools were getting it right was when they valued the person over the job. One participant said their head encouraged them to take PPA at home every week and gave them extra PPA as they needed longer to complete planning tasks.

Another respondent’s school had allowed them to teach mornings only and use afternoons for planning and marking.

Having a designated person for support, and a set time when support is available from a line manager, was another good strategy, as was having additional classroom support to ensure that classroom admin didn’t pile up.

Unfortunately, according to the responses, the negative experiences of being a teacher with an invisible disability outweighed the positives. Some early-career teachers even said that they would leave the profession because of how they had been made to feel. It is little wonder so few speak up.

The Equality Act 2010 states that employers must make “reasonable adjustments” for those with disabilities. Does your school encourage teachers to share concerns, and how supportive is it when they do speak up? My perception is that, for most, the answers will be “not really” and “not supportive enough”.

The writer is a teacher at a secondary school in Bristol