Living with Myalgic Encephalomyelitis (M.E.) has been a challenging journey for me. This neurological illness has often left me bed-bound for extended periods, making everyday activities like taking my child to school or getting dressed difficult, if not impossible at times. Despite these challenges, I consider myself fortunate to still be able to work with moderate M.E., as it has been essential for my self-esteem and resilience.
The fluctuating nature of M.E. poses unique challenges in the workplace, where understanding and collaboration are crucial. With an estimated 1 in 250 of the working population affected by M.E., it's important to find ways to support and retain talented individuals managing this condition.
Based on my experience of running a business while living with M.E., here are some insights to consider:
1. Pacing
Pacing is an energy management technique and is a fundamental part of living with M.E. In the workplace this could mean:
- Being empowered and trusted to manage your time. For example, taking short regular rests when needed.
- Identifying which tasks use certain energy (mental, physical or emotional) and organising your day / week to support this. For example, a day of back-to-back calls may not be realistic whereas 1 or 2 calls spread throughout a day may.
- Baseline - understanding your baseline for work activities. This helps both the individual and the business understand what is realistic on a "normal" day.
Trust me when I say this, pacing can be a real game changer in the workplace!
2. Flexible Hours and the Work Environment
This was a huge one for me and ties in with pacing! Things to consider include:
- Flexible work hours
- Reducing hours
- Changing hours of work
- Remote working
- Hybrid working options
- Offering small changes to work environment such as quiet spaces
M.E. symptoms vary between individuals and can also hugely fluctuate day to day. Having the flexibility to adapt the "how" and "when" we work can significantly impact the ability to contribute effectively.
3. Raising Awareness and Understanding
As with the wider community we need to actively encourage workplace education about M.E. Many employers or colleagues may not fully comprehend the complexities of this condition. Even as someone with M.E. I can often struggle to explain my symptoms. Charities like Action for M.E. offer some fantastic information and guides for both employers and employees. Go check them out!
4. Open Communication:
Having a lapse or heightened symptoms can be challenging for both the individual and workplace. For the individual it can be hard to communicate to others for fear of being judged.
Try to keep in touch with them and offer assurance and compassion where possible. Wider conversations with team members is a personal decision but in my experience can help understanding and create a wider support network too. With the permission of the individual, managers can help to foster this open communication within their teams.
As a leader and business owner I am appreciative and privileged I have been able to continue working and lead our business forward. I know this is not the case for all and it is not without its challenges. However, as an employer and person working and living with M.E. I believe the key to achieving this is through adopting a people focused and collaborative based approach.
