Endometriosis
Talking Endometriosis in the workplace
Niamh Macdonald
Niamh Macdonald

We live in a society that considers itself progressive and open-minded yet when it comes to female health, there still exists a number of loopholes. Endometriosis is one such condition that is often talked about but seldom acknowledged. Women with endometriosis share similar experiences and discrimination, particularly in their workplaces. Despite the growing awareness, they often find it difficult to express their symptoms to their employers. Do you find navigating chronic conditions such as endometriosis difficult in your workplace? Does it feel awkward to talk to your employer for a few days off because of the pain? If this sounds like something you may struggle with, you’re on the right page. The pain of Endometriosis can vary from woman to woman, and it can be disabling. Because endometriosis can affect your quality of life and keep you from working effectively, it’s important to know some helpful strategies to bring up the topic at your workplace.

How Endometriosis Can Affect Health and Quality of Life

Endometriosis is a chronic condition where the normal uterine tissue grows in places beyond the uterine cavity. Studies estimate that this condition affects as many as 10% of premenopausal women worldwide. Endometriosis can develop at any age after puberty, but it is more common in women between 25 to 40 years. The pain of endometriosis is cyclical and connected with your menstrual cycle. Changes in oestrogen levels are responsible for the pain that comes with endometriosis. The degree of pain severity can vary but many women describe the pain as a disabling cramping and twisting quality. Endometriosis also usually results in longer and heavier menstrual bleeding, and may over time, cause depression, fatigue, and fertility issues. Because of the multitude of effects endometriosis can have on the body, this chronic condition can take a toll on your quality of life. The pain can restrict you from functioning optimally and this can reflect in your work as well. That’s why in order to cope with endometriosis and its symptoms, women are encouraged to be vocal about their symptoms to their supervisors at work.

Should I Tell My Employer That I Have Endometriosis?

The decision of telling your boss about your health condition is entirely yours. Many women debate whether telling their employers about their endometriosis would do them any good. Although your autonomy is important, it’s also a good idea to consider the benefits of informing your employer of your condition before you make the final decision. If the cyclical pain of endometriosis is clearly affecting your health and quality of life, you should consider opening up to your colleagues and boss about it. Sometimes the pain from endometriosis can become severe and this can lead to a rapid deterioration of your health. If you have already informed your colleagues of your endometriosis and if this unfortunate event occurs at your workplace, they can respond appropriately and provide you with the help that you require. Endometriosis can also have an impact on your work quality. If you feel that your chronic condition is affecting your ability to work safely, you should consider talking to your boss about it. Sometimes the pain can cause you to become distracted from your job; other times the pain and fatigue could be harmful to other people as well. That’s why being proactive about your chronic illness is always preferable and should be encouraged.

How Do I Bring Up the Fact That I Have Endometriosis To My Employer?

Talking about reproductive health issues, be it endometriosis or any other condition, is always difficult for any woman. Many women are hesitant to open up about their chronic condition out of the fear of being judged or not fully understood. The symptoms of endometriosis can only be understood by the patient and no one else which is why oftentimes employers and colleagues turn out to be less supportive than you’d want them to be. One way to speak to your boss about endometriosis is to make your conversation as articulate and coherent as possible for them. Because many men and even women do not fully understand what endometriosis feels like, it’s a good idea to provide research-based evidence to your employer to strengthen your case if need be. You can help them understand more about endometriosis by directing them to sources such as the Syrona App, brochures, and relevant charities, or the Syrona blog. In addition, you can also get a medical certificate made by your GP about your condition. You should also be honest and answer any and all questions that your employer may have regarding your symptoms. However, this does not mean you’re required to share any more personal information than what it required to help your employer understand endometriosis. Remember to explain to your employer how endometriosis can potentially affect your work as well. While you’re having this conversation, you should try to discuss options that could potentially help you. This includes discussing flexible working options or getting paid sick leaves.

Who Should I Speak With About My Endometriosis?

Any chronic health condition such as endometriosis is extremely personal and should only be communicated to the right person in charge. Depending on your workplace management team, you may speak about your condition with the line manager or the HR manager. If your office happens to have a health and safety team, you should talk to them instead. Generally, someone higher up in the organisation should be informed. If your company has an External Employee Assistance Program, you should try reaching out to them for support and help. Similarly, you can also seek assistance from Citizens Advice Bureau UK, your union council or specialist employment attorneys. Unless you’re comfortable discussing your condition with a fellow colleague, you need not disclose any personal information to them as long as your supervisor has been informed.

What About My Privacy?

It is unethical to disclose an employee’s personal medical records or conditions be it endometriosis or any other health problem. In fact, disclosing confidential information without the patient’s consent is considered unlawful and can be challenged in court. If you have concerns about your privacy, rest assured that your employers do not have the legal right to share your personal medical information with anyone without your approval. You can also make your privacy wishes clear to them.

Returning to Work Post Surgery

The severity of endometriosis can vary from person to person. Sometimes the symptoms of endometriosis are too vague and difficult to diagnose without surgery. In this case, diagnostic surgery may be required. Other times, a therapeutic surgery may be needed to remove diseased tissue. Whatever the reason for surgery is, the postoperative period is never pleasant, and returning to work immediately after surgery can be tough. The best way to go about it is to have your health care provider or surgeon sign and provide written guidance or a medical certificate that clearly outlines the time off you need from work to allow your post-op body to heal. The letter should also include a list of approved duties or job modifications once you can safely return to work. Any movement restrictions should be informed to your employer. In order to get a comprehensive letter writing, you should provide your doctor with an advance directive to avoid any inconvenience later on.

Can I Be Sacked Because I Have Endo?

According to the law, workplace discrimination based on health conditions is not permissible. You can not be fired for having endometriosis or taking time off because of the pain or the treatment. This would be considered an unfair dismissal. It is always encouraged to talk to your employer about your rights first. However, if they are not compliant or supportive, you can take your case up with a trade union representative, Citizen Advice Bureau or get legal advice from Civil Legal Advice.

What If My Employer is Behaving Badly?

Unfortunately, sometimes the employer may not be responding appropriately to you and your health. If this is your case, you may seek legal aid regarding discrimination against or harassing a person in their employment because of a disability. The Anti-Discrimination Law clearly outlines the repercussions of such an unfair treatment

Takeaway

Endometriosis is not always an easy diagnosis to deal with. The lack of support at your workplace could make it even harder. That’s why it’s important to understand your rights and discuss your concerns with your employers as soon as possible. Support from your colleagues and supervisor can make all the difference in helping you deal with work-related restrictions caused by endometriosis. For more helpful resources, download the Syrona App (SORA)

References:

  1. Eisenberg, VH, Weil, C, Chodick, G, Shalev, V. Epidemiology of endometriosis: a large population‐based database study from a healthcare provider with 2 million members. BJOG 2018; 125: 55– 62.
  2. Endometriosis. John Hopkins Medicine. Available at: https://www.hopkinsmedicine.org/health/conditions-and-diseases/endometriosis
  3. Endometriosis. NHS UK. Available at: https://www.nhs.uk/conditions/endometriosis/
  4. Disability rights, UK. Available at: https://www.gov.uk/rights-disabled-person/employment#

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