Having MS is very expensive. I live in the UK and am lucky that most health services are free (paid for via our National Insurance and Income Tax contributions). But there are lots of additional hidden costs for those with a chronic progressive illness.
In January, I felt forced to reduce my working hours from 5 days to 4 and of course, took a corresponding drop in my income. This was the right thing to do and I’m grateful that my employer was able to support my request. But nine months on, I am struggling. I continue to find work an exhausting challenge and now I’m on a lower income, I’m worrying more about money too. I’d really like to reduce to 3 days, but definitely can’t afford to. Holidays, weekends away and regular evenings out are now a distant memory. When I’m not at work, I spend most of my time at home, on my own, recovering. How do people cope with this gradual decline, not just in their health, but also in their quality of life? I just don’t know how they do it!
There is very little financial help out there for people who find themselves unable to work because of their deteriorating health. I have recently applied for PIP (Personal Independence Payment) and now face the battle of fighting my case and trying to show how sick I am to government contracted assessors, employed by ATOS or Capita, with no knowledge or understanding of my condition. For some reason, this person’s view will be more important than my own accounts of life experience and the expert opinions of my GP, neurologist and MS Nurse. There are various levels of PIP and I’m just hoping I will receive enough to keep me afloat for now – it certainly won’t be enough to allow me to reduce my hours again.
I intend to write a longer blog post on my experience of the PIP process at a later date.
When you are diagnosed with MS, you are advised to reduce the stressors in your life, then they put you through a gruelling, time consuming and humiliating process in order to allow you to bring home enough to just about scrape by. When all of that and the grief of what you are losing every day really gets to you, they put you on antidepressants. There must be a better way.
I really want to carry on working for as long as I can. I love my job – I am a teacher but currently work for my local authority for a small team who support and champion the education of children who are in care. It is challenging, sometimes distressing, often rewarding work, with a high level of responsibility. I work with an amazing team of people, who are also my friends and I am fully aware of the support and benefits available to me as a public sector employee (although the building I work in is not disability friendly by any measure). There is evidence that, where possible, continuing to work is good for our mental and physical health. Maintaining routines, contributing to society, using and learning skills and connecting with others on a regular basis definitely contributes to wellbeing.
And yet the system doesn’t encourage those with chronic conditions to stay in work. Yes, there is entitlement to reasonable adjustments, help with getting to and from work and other schemes (such as PIP), however, there is nothing to replace lost income when you can no longer manage full time hours. My GP has already mentioned medical retirement …but I don’t want to retire! I want to work!
This article from healthline.com discusses some of the issues that MSers, with deteriorating health, face in trying to keep working.
“Data suggests that lost work productivity due to MS or the need to retire early is the largest single factor contributing to nonmedical costs of MS.
Loss of income is also associated with a corresponding increase in disability claims for governmental programs and insurance providers.
Nonmedical costs include short-term and long-term absence from work, reduced work hours, changing the type of work to a less physically challenging and stressful nature (usually at lower pay), and early retirement.
Although the costs vary by person, these factors result in reduced productivity and substantial income loss for those with MS.”
I’m going to do some more research on this topic, but in the meantime, here is my overall conclusion …
