The MS Tax

When you receive your multiple sclerosis diagnosis, it always comes at a cost. 

Not only does your idea of your future self get thumped backwards, by the time you hear those three dreaded words “You have MS”, you probably already found out that life with a neurodegenerative illness is not a single, cheap financial event. 

You might spend plenty of time on sick leave, or you might need to change the way you commute to and from your job just to show up at all. Perhaps GP visits, medicines, and accessibility measures at home to improve being able to move around at home eat away at your savings. Other things like holidays, Christmas and birthday presents or something as simple as clothes, a meal in a restaurant or a cinema visit to see the latest blockbuster, eventually begin to  elicit a dreaded, "How am I going to pay for this?"

 

Having retired from the workforce because of my MS, the above phrase has been one often repeated.

Needless to say, the past few years only added to this, as the pandemic and war in Ukraine hit the financial and energy market causing global inflation and rising prices of everyday items. The cost of living in Ireland has skyrocketed to a level that reminds me of the financial crisis of 2008. Being practical-minded out of necessity, I tend to look long and hard at ways to help me reduce costs in the long-run, whether it is energy, internet, or mobile phone providers. This means scouring the internet hours on end trying to find alternatives. If you're looking for cheaper, tangible products like presents, you might opt for longer delivery times because these products may come from countries like China. For other items like leather shoes, you may want to shop local, pay a bit more and know they will last a lot longer.

One example of going cheap was a decorating idea I had in mind for a bathroom wall, as I wanted it to be different and typical of me at the same time. The end result is part of a wall filled with stylish black and white canvas photos bought on Wish, in A4 picture frames bought in bulk from IKEA. The total cost of each finished item was around €6, and spread over a 3-month period as the images took weeks to arrive. Had I bought the same images on Amazon UK, I would have received these much faster but have been paying far more.

One of the issues of having to weigh up costs is to not give in to online impulse buying. I take forever looking for a new phone or clothing from the internet. By the time I am ready to buy, good sense will tell me if I still want it or not. But of course, your basic needs and quality of life take priority: food, a roof over your head, medicines, clothing are things nobody should have to go without. Sadly, today's societal costs go far beyond what we had been used to in the past, so asking yourself "how am I going to pay for these?" have become a mainstay for many.

Despite the issues people with MS are confronted with, there are governmental benefits and organisations that can help you if you are struggling financially.

For medicines, GP and hospital visits or rehabilitative services, check if you are eligible for a medical card or if you qualify for the Long Term Illness Scheme. A Medical Card will give you access to certain medicines for your MS, GP and hospital visits, while the LTI gives people with MS access to disease-modifying treatments as well as appliances. You can claim tax-back on your medical expenses so check Revenue.ie. It is well worth getting what you are owed.

Indirect costs like supports for carers may be granted by the Department of Social Protection. Do check citizensinformation.ie for more and give them a call if you have any questions you need answered.

From the 2022 report by MS Ireland and Novartis, we know the total annual, societal cost of MS in Ireland is approximately €483 million, a 12% increase on the total from the 2015 study. This increase however doesn't mean that you might not find access to the care you deserve. MS Ireland via its Voluntary Branches might be able to offer you financial assistance to help cover the costs of some expenses linked to your MS. There are of course aspects to it in that the financial assistance is not an entitlement but rather a discretionary payment based on needs. If you want to know more, contact your local regional office today.

From a personal perspective, do not skip corners where your health is at stake. It will only be to the detriment of your quality of life in general. Also, don't be afraid to ask for help. You are most certainly not alone, so do speak up.

REFERENCES

▪️Medical card information

▪️Long Term Illness Scheme, illness covered

▪️Access to disease-modifying treatments as well as appliances

▪️Supports for carers

▪️Societal Cost of MS 2022

▪️MS Ireland Financial Assistance

▪️MSI regional services 

▪️Electricity Costs Emergency Benefit Scheme, Commission of Regulation of Utilities 

-Problems paying your bills, MABS

- Revenue.ie 

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