The cost of MS in 2022

All of us who live with MS know the cost of MS is more than just money, it costs us our careers, relationships, happiness, energy and quality of life.

With the cost of living crisis affecting everyone all over the world, I really wanted to take a look at what the cost of MS is for us financially.  My understanding is that Government support in many countries is hard to navigate or barely worth it.  I know I continue to work full time due to the financial pressures in my life.  So, if so many of us with MS, disabilities and chronic illnesses are already struggling how are we going to survive the additional stress and financial impact of the cost of living crisis?

Monthly spend

Something I have been thinking about over the last 2 years and since my diagnosis is how many extra things I have to pay for in order to ensure I can function on a daily basis.  I suspect I’m not alone in having to pay out for these extra expenses each month.

I decided to calculate my average monthly outgoing on things I wouldn’t need if I didn’t have Multiple Sclerosis, the total came to average of around £221.04 per month. This includes my vitamins – totaling £51.98, my pre paid prescriptions £9.01 (£108.12 per year in the UK), extra painkillers around £20 and taxis to get me to things such as hospital appointments when I can’t walk far or catch public transport which totaled an eye watering £139.96.  

I know that this goes for every single person living with MS, so I put the question out there to the shift.ms community and other things people spend money on can total up to $500 per month and include chiropractor appointments, private physio, oxygen therapy, CBD treatments, delivered meals, health foods, parking at the hospital, exercise programs, incontinence products and massages to name but a few.

The support struggle

When I was diagnosed a few years ago I had to have quite a lot of time off work, I couldn’t navigate how I was going to continue to work full time with this added strain on my life and being in so much pain every day was and continues to be a real struggle.

If you think about being diagnosed with a life long condition (sometimes at a very young age), you would like to think there was government support in place which means you can focus on your health and be able to take time off work when necessary.

I have applied and failed to get government support in the UK and I pay for all of the additional costs out of my own wages, it’s pretty depressing.  In the UK our government support scheme very long winded and is completely based on whether you are able to do things in your daily life at one particular time.  This means someone with absolutely no medical background judges whether you are ‘disabled enough’ to receive support.  I speak to a lot of other people living with MS who live with this ‘imposter syndrome’ which now I begin to think about it is due to the systems we have in place in this country such as PIP and disability benefits as they simply judge you on this factor.  It doesn’t take into account the fact that, especially with Relapsing Remitting MS sometimes you can manage but other times you can’t and you need a bit of help.  It feels as if you are actually being penalized for trying to keep working and lead as normal a life as possible.

Putting this to one side, whether you have MS and are working full time, part time or currently out of work – the cost of living crisis is going to have a huge toll on all of us, as we already have additional outgoings to cover each month.  

Seasonal health

The seasons when you have MS can be very challenging at the best of times. For me – winter is not my friend, I will catch any cold there is and my body struggles to warm up once it’s cold. I rely on things such as hot baths, the heating, hot water bottles, cups of tea to help regulate my body temperature. These things all cost money.

Not to mention that I work from home almost full time which means I will need the heating on in the day – something I know is a big worry for a lot of other people in the MS community. We are unable to visit the office every day due to our condition but may be forced to if we cannot afford the heating bills for our homes all day. The same goes for people who are completely unable to work due to their MS, their homes will need to be heated all day too.

Last winter I had a relapse which ended up in several trips to the hospital and then a need to change DMT. And at that time, I didn’t have any worries about putting my heating on, but now the cost could be up to 80% more per month.  So, like a lot of other people, this winter is a big worry.

Balance

We need to look after ourselves in order to avoid a relapse, infection and hospitalization, all of which impact on the services we access, which are already under pressure.  But unfortunately, the very basic things we need to do are no longer available to us due to the cost of living crisis.  It seems as if it is too much to ask for recognition and acknowledgement that we need a bit of help to be able to continue to lead as independent lives as possible and to contribute to society.  
A lot of people living with MS during the cost of living crisis are going to have to chose between the very basic things which make our lives easier. Bearing in mind that I haven’t even touched on the impact this will have on people’s mental health – this is a pretty worrying thought.

The MS Society have launched a petition in the UK to urge the Government to do more to support people living with MS and they also have some great resources on getting support at this difficult time.

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