Working with fibromyalgia – can it be done?

Working with fibromyalgia and being a parent

Working with fibromyalgia can be extremely tough. Being a parent and working can also be tough. What happens then when you have both? Can you work with fibromyalgia whilst you are a parent?

Research articles

Southside Pain Specialists concludes that with the right workplace adjustments, people with fibromyalgia can continue to work full or part time. WebMD also support this conclusion that working with fibromyalgia can be difficult but if managed well, people can continue to work.

FMAUK have produced a useful post about coping with the symptoms of fibromyalgia whilst working. They argue that one should consider if you are getting pleasure and value from your work. If you are forcing yourself to work, one should really consider why you are doing this.

Can I work with fibromyalgia and be a parent?

However, when I typed in ‘can I work with fibromyalgia and be a parent’, no results came up at all. Therefore, I will do my best in this post to try and summarise my findings. This will be based on my personal experience, experiences of others and researched web articles.

My personal experience

Teaching

In 2016, I successfully graduated from teacher training with Qualified Teacher Status in Primary Education. I began my first teaching job in the September of that year and really thought I had found my calling.

Before an official diagnosis of fibromyalgia, my doctor had signed me off work a few times with anxiety and depression. In June 2019, I was offered a promotion in another school. I eagerly took this job but I also had my first rheumatology appointment in July 2019. That is when I was diagnosed with fibromyalgia officially.

Leaving teaching

Unfortunately, my fibromyalgia, anxiety and depression only got worse after my diagnosis. Disappointedly, the school I was in was not responsive to my needs. My doctor signed me off again and I got in touch with my union to get me out of teaching.

This was an incredibly hard decision to make as when it was just me, up at the front of the classroom teaching, things were amazing! But then reality would hit later. I was always the first one in the building and the last person to leave at night. Additionally, I would have to get up at 5 a.m. to finish marking books and still have more to do later. I also couldn’t deal with the endless amount of paperwork, and the office politics was draining to say the least. I knew that by the beginning of 2020, I just couldn’t teach anymore. It was too painful to bend over tables to mark work, too tiring to stand and too anxiety-provoking to continue.

I knew that it was the right decision for my physical and my mental health though. I still get embarrassed saying to people that ‘I used to be a teacher but I ended up leaving’ as it makes me feel like a failure. However, my counsellor said to me you still are a teacher. Just because you are not in the profession anymore doesn’t mean that qualification is taken away. I miss the children and the teacher salary but my health comes first!

Other job roles I tried

Afterwards, I tried my hand at numerous other jobs. I tried being a full time personal support worker for adults with disabilities but the hours and work were too demanding of me physically. Eventually, I began to realise that part time work was what was best for me and my health.

Before maternity leave, I was a 1:1 learning assistant for a child with autism and it was the best job ever! I adored the close bond I could develop with the child and the personal learning experience I could create. By 1:00 p.m. every day I was home and could sleep the afternoon away.

I knew pretty much straight away after having my son that I could not return to work at all. Firstly, my anxiety was too bad and I could not be without my son or leave him with anyone. Secondly, my pain and fatigue levels were too high. I couldn’t imagine doing a day or a half day’s work and then coming back to parent. My fibromyalgia and chronic fatigue syndrome just wouldn’t allow it. If I am perfectly honest as well, I love being a stay at home mum. I get to watch my boy grow and experience all the joys that parenting brings.

(Please note that in no way am I encouraging you to hand your notice in now and leave your job! It was a well thought out, researched and advised plan that I made and took lots of preparation to come to that decision. )

Others’ experiences with parenting, fibromyalgia and working

To really give a rounded view to this article, I reached out to Facebook communities and asked for people’s opinions and experiences with working when they have fibromyalgia and when they are a parent. Kindly so many people responded! As I received so many useful points, I have summarised them below for you all.

(I want to thank you all from the bottom of my heart for responding with such personal stories and insights. It really is appreciated and know that you are helping other fibro warriors in the same boat as yourselves! We are stronger together!)

Summary of responses

Children and working with fibromyalgia

• Some said that it depended on the needs of their children if they had additional disabilities like special educational needs, autism etc.
• Lots commented how, unfortunately, they had to work as they were a single parent . Others are not able to make ends meet without work and worried about the stability of their finances if they didn’t work.
• Others mentioned how managing work and children was all they could manage and struggled to fit in time for themselves and socialising.
• Some mentioned how they work full time with children but it leaves them drained both physically and emotionally
• A few people mentioned that they run their own business and work from home and this can be easier when they have children. Working from home and owning a business means they can set their own hours and adjustments.
• A number of members commented that it is easier on their fibromyalgia to be a parent than work full time as being a parent is a full time job in itself.

Symptoms and severity

• Many people spoke about how it depended on the severity of their illness and how they controlled their symptoms.

• Some have had to give up work due to the strain on not only their physical health but their mental health too as fibromyalgia is much more than just pain and fatigue.
• The majority of people I spoke to stated that they could only work part time.
• Some were very lucky to have the help of a supportive husband, like I have, who takes on the other roles and jobs that need doing.

Claiming benefits and stigma of not working

• A few had managed to successfully claim Personal Independence Payment and other disability benefits but a lot were scared to go through the process.
• People were also concerned with the stigma of not working and feeling useless. They wanted to feel as if they were contributing and improve their self esteem by working. They couldn’t imagine staying home all day.

• Also, a lot of people commented on the mental health benefits of still continuing to work and having a purpose to get out of bed in the morning.

• Lots of people commented how they made the difficult decision to stop working and it is still something they are coming to terms with but ultimately was the right thing for their health.

• There were quite a few members who said that their workplace didn’t support them with their disability or they were scared to disclose it to their employers for fear of discrimination.

Reasonable adjustments your workplace could make

If you do decide to stay in the workforce, fibromyalgia is covered by the Equality Act 2010 and it is important to disclose it to your employer so you are protected. There are no specific adjustments a work place is legally meant to put in place, but what they class as reasonable adjustments to support you to continue working. The normal course of action is you are referred to Occupational Health who write a report with recommendations for your workplace to follow, based on their assessment of you. These might be things such as short breaks, task rotation, flexible working or specific software or equipment that might help you. Make sure you fight for your rights! You deserve support.

Mummy the Fibro Warrior Top Tip

1. If you can continue to work with fibromyalgia and as a parent, make sure you are clear with your needs, have regular reviews with your boss and speak up if something isn’t working. We work to live not live to work! Our health and our family come first.

If there is one takeaway I need you to remember today is that you matter. You are important. Your health is important and you deserve support be that in work or not in work. You have value either way. I need you to know you are doing the best you can, your child/children love you just as you are and you are Mummy the Fibro Warrior!

Until next time,

x

p.s. Please do comment below your own experiences of working and being parent with fibromyalgia! Have you got any tips to help other parents in a similar situation to yourself? I can’t wait to hear from you

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