Working together at home and at work: balancing careers, disability and caring responsibilities

Steph and I found out she had MS (multiple sclerosis) in our early twenties. While we were grateful for the early diagnosis, we had no idea what MS was or what it meant for us.

MS is a neurological condition where the immune system attacks the body’s nerves, and because nerves help control the body, people with MS can experience a wide range of symptoms. That's meant caring has been a rather fluid endeavour.

For a long while, I didn’t even recognise myself as a carer. I just saw MS as something we were going through together. But over time, it became clear that I had a role and a responsibility as a carer, and it was only then that I took a step back and found support for myself too.

What being a carer really means

There’s no one-size-fits-all approach to caring - everyone has different support needs and situations. For me, it’s about helping Steph live her best life and tackling challenges together.

Communication is very important: there’s a balance between simply ‘doing something for someone’ and ‘helping them help themselves’. We all deserve independence, and the goal should be helping others to achieve that.

Of course, I support Steph the best I can. Practical sides include:

• Helping Steph get to and from where she needs to go, such as medical appointments, shops, or most importantly, for cake and coffee!
• Navigating the outside world. Generally, the world isn’t very accessible, and forethought must be given to parking availability, dropped curbs, wide pavements and suitable terrain.
• Helping around the house, preparing food, making drinks, and doing usual household chores.
• Taking Steph to doctors and pharmacy appointments, or sometimes just posting prescriptions or picking up medication.

The importance of workplace support

For me, without flexibility and workplace support, I couldn't work. They're crucial to sustain both my role as a carer and my career as a software tester. Small changes can make a big difference to carers’ lives. According to Carers UK:

• Over 1 million working-age carers are not in paid employment.
• 2.6 million people have given up work to care - that’s 600 people a day.
• Being out of work is the single strongest predictor of poverty for unpaid carers.
• Employed carers are more likely to work part-time than non-carers (38% compared with 29%).
• Caring responsibilities often affect career progression, with 69% of working carers saying they have not focused on their career as much as they would like and one in five taking a lower-paid or more junior role to fit around caring.

Learning to advocate for ourselves

Speaking up can make a real difference, as without advocating for ourselves, we may not get the support we need. Throughout my career, I’ve found the following helpful:

• Speak to your manager. They might be able to offer flexibility and different ways of working. As they're often closest to your day-to-day role, they can help find tailored solutions or help fight your corner.
• Speak to HR. There might be a policy or procedure that already exists that you may not be aware of in support of carers. Some companies may be aligned with a charity that can be a great resource for help and information.
• Check out your company portal/intranet. Often, guidance and policy documents are available within a company portal, and it’s worth investigating to see if there is a policy or information that may align with your situation.
• Champions or networks. Some organisations have support networks with specialists that are often clued up to provide, or signpost to, information. I’ve seen this in larger organisations where it may feel a little overwhelming to try and find internal support.

Some or all of these routes to support may not be available. However, speaking up about any challenges you face, even if it’s to a trusted colleague or friend, can open doors and opportunities that you may not have known existed. 

Advice for other carers

Don’t feel guilty. I say this as someone who suffers from guilt A LOT.

Much like we care for those whom we love and support, there are others out there who are willing to do the same for us. We don't need to live in a support vacuum, and asking for help is okay.

It’s so easy for carers to split their lives between caring and work, leaving nothing for our own well-being. That might mean less time to exercise, eat well, stay hydrated, rest, see friends and family, enjoy hobbies, and do the things that bring you joy.

Reach out for support if you need it. In fact, reach out for support before you think you need it. In my experience, burnout is a slow creep, often building over a long time. I like the analogy of carrying a backpack, where someone keeps adding stones slowly over time. You don’t notice the incremental increases, but eventually you feel exhausted, struggling to stand. It’s often easiest to deal with the backpack of stones while you’re still managing it comfortably.

There are charities to reach out to. Care for the Carers and Carers UK are two I’m most aware of, but many more exist. Counselling or therapy can also be a great help, and can provide impartial advice in a safe space.

What employers can do to support carers

Be open and look out for employees who may be struggling. Make access to any available support clear and easy to find. Check in with carers to understand whether the support is working, what challenges they’re facing, and whether anything needs adjusting. Support should be tailored to the individual. The ultimate goal is for everyone to win, and working with carers to find solutions is the best way to support them.

Final thoughts

For a long time, I didn't see myself as a carer. I just saw Steph and me navigating life together. While that hasn't changed, I've come to realise that accepting support is just as important as giving it.

Caring can be challenging, but it shouldn't mean sacrificing your own wellbeing, career or ambitions. With the right support, it's possible to continue building a life, a career and a future together. 

Sources cited throughout

• https://www.carersuk.org/policy-and-research/key-facts-and-figures/
• https://www.carersuk.org/
• https://www.cftc.org.uk/
• https://www.carersweek.org

 

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