Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting to you about the Financial Burden of ME. This is something I struggled with for years and I want to highlight this area as I feel like it’s another thing that’s forgotten about when it comes to ME.
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Let’s jump straight in.
As you know now, I lived with ME for almost 10 years. During that time, I was unable to work. As I was only 21 when I became ill, I hadn’t really had the opportunity to earn much money, let alone save. I’d had odd jobs growing up and worked throughout my time at college, but they were low wage, hourly rate jobs. In all that time, I was just pleased that I’d managed to save up enough to buy my first car, insure it and pay for the fuel. It was a second-hand blue Vauxhall Nova that I called, Micky! He was ace and sometimes, the heat function actually worked! But I digress!
Having and starting your first job is like a rite of passage that pretty much everybody goes through as they begin to enter adult life. With it, comes more responsibility and the possibility of more prospects. Things like moving out of the family home, getting onto the property ladder, buying a car or even setting up a pension! All of the things that several people take for granted. Not the case when you have ME.
Let’s face it, if you can’t work, it’s very difficult to earn money. Without money, you are very limited in what you can do, where you can go and the things you can buy or pay for. In the UK, our welfare benefit system can be difficult to navigate. It’s often not clear if you are even eligible for any form of financial support. Add to this, the brain fog, the poor concentration and the short attention span that can come with ME, and it can feel like an insurmountable task to even start to investigate this aspect, let alone try to complete any of the required forms.
This was something that Mum helped me to deal with. I say she helped me, she pretty much did it herself! It was very difficult to find out what I may have been entitled to and Mum was looking into this whilst looking after me, managing the house and working full time! I’m pretty sure she has a super-hero cape somewhere in her wardrobe that I’ve just never found! I’ve no idea how she did it all.
Now, I am aware that some people with ME can continue to work, sometimes in a part-time capacity and sometimes in a full-time capacity. That wasn’t the case for me with my ME and my Labyrinthitis. I honesty tried as long as I could to work and to keep the hope of working alive for my own self-worth and self-esteem. Unfortunately, it wasn’t to be for me. And that meant, trying to work out what I may be able to claim in terms of financial support for me, but also for Mum, as my carer.
If you are a carer, and in the UK, you, and the person you care for may be eligible for benefits such as Income Support, Employment and Support Allowance, Job Seekers Allowance, Pension Credit, Housing Benefit, Council Tax Benefit and Personal Independence Payment. I’m certainly not an expert in this area but I do remember being told that each person’s circumstances are different and so other benefits may be available to different people. I believe that eligibility for benefits may also depend on your family circumstances, any savings you have and, in some cases, your National Insurance record. I would always recommend seeking advice on this. Some useful places that may be able to offer support and guidance would be the likes of ME charities or the Citizen’s Advice Bureau. If you have a supportive GP, physiotherapist or other specialist, they too may be able to point you in the right direction.
Regardless of whether you have a carer, please do not be put off making a legitimate claim for welfare benefits. Having access to this financial support could make a difference to living independently or being able to factor in sufficient time to rest in your day to help stabilise your symptoms.
I remember that we had to persevere with an application to ensure that we had captured all relevant information. It was exhausting. It was mentally and physically draining going through the pages and pages of questions in the form before submitting it. It was a fine line trying to balance what I would have classed as a good day for me, with being at my worst, and being able to put that into words for somebody else to interpret. The variability of the condition didn’t seem to fit neatly into the form that had to be used. After all, I didn’t want to say how awful things were if the assessor turned up and I was having a bit of a better day. I didn’t want them thinking I was a liar or a scammer in some way.
And then I still had to wait to hear if there was going to be an assessment visit. When we received the notification of the assessment visit, I had to adjust the plans that we had made for the days running up to the visit. This was to ensure that I would be able to participate in the visit. I remember not sleeping very well the night before the visit. Not the most unusual symptom for me but one I could have done without.
The assessor arrived and seemed nice enough. I had managed to move myself to the living room for their visit and had my wheelchair on hand if I needed to move to somewhere else in the house.
When the assessor was asking her questions, there were times when I struggled to follow the conversation. Thankfully Mum was there to keep things on track and answer when I stopped mid-sentence!
One of the things I remember having to do was to explain that I wasn’t just tired. I had to use words like “exhausted” and “debilitating fatigue”. Explaining that I had to choose between brushing my teeth or washing on some days, helped to begin to build a picture. I remember that we had to give examples for almost everything to try to ensure that the assessor didn’t just make assumptions.
I know of others who used the “But” rule. You know, when the assessor asks a closed question, answering it and then adding the word “but” and then going on to explain in more detail, what you mean. For example, if you are asked if you can use your phone to send or receive a text message; don’t just say yes or no as a response. Try something like, “yes, I can read a text BUT not first thing in the morning as I need a few hours to get my brain fog under control. I can then read one or two lines and only if I pick the right time in the day to do that as it makes my hands hurt to hold the phone, it gives me a headache to concentrate on the screen and I need somebody else compose a response when I’m ready to reply.”
I would recommend having somebody with you for your assessment so that they can take notes and help you respond to questions, or just help you in and out of the building if you must go to the assessor.
And try to think through the little things that you need as well as the bigger things. Yes, I needed a wheelchair to get around, but I also needed a flask of hot water and a packet of crackers on the table next to me so that I could try to make myself a cup of tea or a packet of soup at lunch if Mum wasn’t going to be home and I felt hungry. I needed a straw some days as I was too weak or shaky to risk holding a cup up. So, think about all the things that you use to help you in your daily tasks. That might include setting a timer to remind you to take a rest or using flash cards to warn visitors or others in the house when your energy is waning and that you’re on your ”power down” mode. It could be sitting on the toilet to wash your hands or brush your teeth as standing takes too much energy. All these sorts of things should be considered as part of your assessment for financial help. Unfortunately, I’m not sure how often that is the case. I know if didn’t make much difference to my assessment at the time.
We waited a while for the first assessment result to come back. Over the years, I had to go through it all again and was even told, at one point, that my paperwork had been lost in a fire. It was heart-breaking to have to go through it all again and, in the meantime, be without any financial support. I had to consider selling my car and that felt like a massive thing to do. It was like losing the last of my independence even though I couldn’t drive it anyway!
I like to think that things have changed and developed over the years, but I know that people do still come up against these sorts of struggles.
That brings me to a few points from today that I’d like you to take away from this:
1. Whether you are working or not, you may be entitled to some form of welfare support benefits.
2. If you are or need a carer, you may be entitled to additional benefits.
3. You can access free support and advice from the likes of the Citizen’s Advice Bureau or ME charities. I know that Action for ME’s Welfare Advice and Support Service offers expert, confidential advice. You can find them online at www.actionforme.org.uk
4. You can ask for an extension if you need it to complete the paperwork involved in applying for benefits and you can ask for a home assessment if you are too unwell to travel to an assessment centre.
5. You can appeal the decision made if you feel it has been unfair.
So that’s it for today everybody. I’ve touched on my experiences of finances and the burden that it can bring to somebody with ME. In doing so, I’ve chatted about the help I needed to research and then complete the paperwork for the basics of applying for benefits, some tips that I used to help explain my limitations to a benefits assessor and I’ve given a reminder that you can appeal a decision that’s been made. Please do ask for help to navigate this aspect. Reach out to family and friends and ask them to support you through this. For carers who may be listening, you may need support also and I would point you in the direction of carersuk.org.
Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk
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