Episode Summary
Michelle shares her experiences on having Fibromyalgia and chronic fatigue. The inaugural #PartofMe podcast episode. Michelle kicks us off by talking about hidden disability. Where does the stigma surrounding this come from? To truly recognise and value disabled people with hidden disabilities, Michelle offer’s her advice for creating inclusive business.
Transcript
| Esi:
Hi everyone. Welcome to our new blog section part of me. We’re going to be interviewing several disabled people over the next few months to get their point of view of their disability and how they manage with their disability in and out of the workplace. Today, we’re talking to Michelle Marlow, who had fibromyalgia, and she’s going to tell us about promo myalgia from her point of view. Hello, Michelle.
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| Michelle:
Hi, Esi.
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| Esi:
Could you tell me, first of all who you are and what you do?
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| Michelle: Yeah, my name is Michelle Marlow. I’m 38, no 37
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| Esi:
It’s very important to get that right,
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| Michelle:
And I work as a personal assistant.
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| Esi: Brilliant. Can you tell us a bit about what personal assistants do?
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| Michelle:
Yes So I work with many different people. Some people that I support have a disability. Other people are a bit older than some and have dementia. Others just need a little bit of companionship. So I go in to help them with their daily chores, or just help them around house, go out and about, and not to take over their life, but just to help them with everyday life.
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| Esi:
Excellent. That’s a really good description. I think, I think it’s really important, because you’ve got fibromyalgia, people will think, oh my gosh, a disabled person supporting a disabled person. But it’s nice that you’re saying this, because it shows people that it can be done. I will just explain to the people listening that tonight is the fifth of November, so it’s Bonfire night, so if you hear fireworks in the background, that would be why. So can you tell me a little bit about how Fibromyalgia affects you and fibromyalgia from your point of view?
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| Michelle: So I have fibromyalgia and chronic fatigue syndrome. So I was diagnosed most recently with fibromyalgia, probably about three or four years ago and chronic fatigue, possibly six seven years ago now. So the way it affects me is the chronic fatigue and fibromyalgia both make you very tired. With the fibromyalgia, I experience a lot of pain in my joints, in my legs, and most recently, suffer with quite bad migraines. So fibromyalgia can be very painful, very tiring, and mainly during the night. I find that my Fibromyalgia affects me mostly at night time when I want to rest and when I want to relax. I find that the pain is quite exasperating at times it is helped with a low dose of medication, which just helps my muscles to relax a little bit more than what they would normally do. So for me, it means that I do get very tired and I need to learn, and I have learned about how to pace myself through the day so that I don’t crash and burn.
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| Esi:
So what are your some of the sorry, it starts again. What are some of the coping strategies that you put in place to help you manage
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| Michelle: So I was very fortunate that a few years ago now I was offered a chance to do some CBT, which really helped me, but I know hasn’t or doesn’t work for everybody. So when I went to CBT, we were given a number of different ways of coping, but the one that I found worked best for me was the analogy of thinking of our bodies and our energy levels as small batteries, little AA batteries that you might put in the back of your clock and thinking that, okay, so my body is this little battery. It’s not a great big car battery. So we can’t keep going and going and going. We think about our bodies as a number of different small batteries, but lay them on the table and leave a space in between them, so we use a bit of our energy, and the bit in the middle is the bit where we have to rest. And I found that really prevalent for me, and my life as life for me, has always meant running as car battery, up until that point where I realised, actually, yes, this is what I need to remember. For me. I need to remember that I can’t keep going and going and going without resting, because I will just crash. And when I have crashed in the past, it’s meant that I’ve been unable to then work and. For maybe a week or so at time, which obviously doesn’t do depression, you know, causes you to be quite depressed. For me anyway, as I would berate myself for being in that situation, very frustrating as well. So that’s the way I try to cope in my life now as a personal assistant, obviously, it’s been a complete journey for me from my previous career, and I know now that I love my work very much and but I know also that I need to look after myself so I can look after the people that I support.
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| Esi:
You know, I think that’s quite an important thing that you just said about how you have to look after yourself in order to support the people that you work with and look after people, you know, I imagine, I mean, I’m the same. I kind of work myself into the ground and then realise that I’ve kind of drained, and then they need a week off. I think it’s quite it would be quite a important message to give across the people listening that actually you know you have to look after yourself, because if you don’t look after yourself so you’re not going to be able to manage with the other responsibilities and things you have in your life as well.
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| Michelle: Yeah, absolutely, it’s been a hard lesson to learn. However, I really appreciate having been given those coping tools, because they’ve been invaluable to me my life. Yeah.
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| Esi: Okay, thank you. So I mean, around disability, there are so many myths that surround disability. So for example, with autism, one of the myths that surround autism is that people have special powers, which we’ll talk about in another blog. But I was wondering if there’s any myths or any kind of things that people just assume about people with fibromyalgia and chronic fatigue.
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| Michelle: I think that in the past, certainly I’ve heard that chronic fatigue has been likened to or maybe back in the 80s yuppie flush, or the lazy disease. Wow, I think people assume that when you have chronic fatigue, I’m not too sure about fibromyalgia, but certainly with chronic fatigue, that people assume that it’s an excuse to be lazy. It’s something which makes me quite cross, because I feel that for me myself from, you know, living for me with chronic fatigue and fibromyalgia is anything far from, yes, there are times where I need to rest, but for the most part, I do try my best to carry on. And I think for anybody else who listens to this and is also living with ME, or fibromyalgia or chronic fatigue syndrome will completely agree that it’s the most frustrating condition to have, you know, to for not for people not to be able to see it. But judge you, it’s very frustrating, it’s very upsetting, and there’s a lot of education that needs to come to stop those myths.
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| Esi: Yeah, yeah. Yeah. I mean, having a physical disability myself, people still make assumptions about me, but not that I’m not disabled. So that would be really frustrating that. I mean, going back to what you were saying about people calling it yuppie syndrome, I mean, that’s terrible,
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| Michelle: Yeah, I think I definitely have heard that. You know, in the 80s, it was known as yuppie flu.
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| Esi: Wow. Well, hopefully we’ve moved on since the 80s. Hopefully not music wise, because I do love 80s music, but not with how we feel about disability anyway. Back on track, if you had to choose, I mean, I know this might be a hard question, but if you had to think of, you know, one or do a couple of things. What do you think the hardest thing about having Fibromyalgia would be
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| Michelle: The Hardest thing for me probably goes back to being frustrated because I can’t do the things that I well. I can do the things that I want to do. However, I just have to be mindful that, you know, the days after may not be the best for me. You know, it might mean that I have to sacrifice something, because I will need to rest, and I will be sluggish, and I may be more pain than normal. Stress is a big factor when I get stressed. I know that my symptoms are more prevalent than other days. So yeah, I think for sure. frustration, for me, is the biggest thing.
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| Esi: Okay, did you, I mean, I know that you said that you’ve had fibre or your diagnosis of fibromyalgia about four years ago. What did you do before? Did you do with your life different in any way?
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| Michelle: So for me, fibromyalgia started with chronic pains in my armpits and across my chest, so many trips backwards and forwards to the doctors. Happened, and one doctor said, Oh, it’s a muscle that’s causing you problems. Another doctor said, Oh, it’s a glands. What I failed to tell them at the time because I didn’t think it’s relevant, because the pains in my armpit and across my chest was so bad that actually I forgot about the extreme pains that I have in my hands, in my arms, in my legs. And it was only when I said, Look, you know, my hands really hurt all the time. I’m losing grip with, you know, certain things that they looked a little bit further into it, and obviously diagnosed me with fibromyalgia. It has been a long journey, and it is about getting to see the right people. And fortunately, in being diagnosed with chronic fatigue syndrome, I actually happened to see a locum doctor who was studying the effect
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| Esi: Wow
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| Michelle: Of me, and she recognised that all my symptoms were exactly that of what she was studying. So she was very by chance, because obviously, beforehand, I’ve been backwards and forwards to the doctors, I’ve been extremely tired, and it’s because I’m doing too much, or I’m a mum, or there was always something else behind it. But yes, I’ve always been those things. You know, I’ve always been busy and I’ve always well, I’ve been a mum for 18 years, but I’ve never felt so lethargic and exhausted and run down as I had at those times.
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| Esi: So obviously, celebrating disability and some of our listeners will be working in business. Celebrating disability works in businesses to support businesses to become disability confident. So some of our listeners will be working in businesses, either as line managers or employees themselves. So if we start with thinking about advice that you might offer employees who have maybe newly been diagnosed or starting a new job with a hidden stability or fibromyalgia, what advice might you give to them?
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| Michelle: To a manager, I would say that if you haven’t heard of fibromyalgia, maybe do a bit of research, get some advice in how you can support that person. Don’t dismiss them. Um, don’t be embarrassed by the fact that you may not know what it is, I would say, get some education. Find out what it is, be proactive and be supportive. I know that isn’t always the case. And you know, times are moving forward, and it’s great to think that companies like celebrate and disability are there to educate people with, you know, supporting companies and their employees for people that do have disabilities, whether they’re physical or hidden disabilities, you know, is a big part of our culture these days. And I think more and more we’re seeing that, you know, people who go to work do struggle with mental health and maybe leave their jobs because they don’t feel supported by the managers. And I think it is really invaluable that managers go and seek some advice.
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| Esi: Okay, brilliant. What about advice for employees? What advice would you give an employee who have fibromyalgia in the workplace?
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| Michelle: So I would, I would say, try and find the confidence to broach the subject with your manager, as it is important. That they need they know how you feel on a daily basis, or if you’re struggling, or if you’re not achieving the goals that you should be achieving for work. What the reason is for that, and if it’s because you’re in pain or you’re exhausted, try and find the confidence to speak to your manager so that they know how to investigate, how to help you, where to start and make some reasonable adjustments for you. And I know how difficult that is for employees to have those conversations, as I’ve been there myself. And also been dismissed myself and you know, and obviously the loss of confidence that that brings you is can be huge. So I know it might be hard, but try and have that conversation with your manager, and if that doesn’t work, go and seek advice from occupational health if you have that support or HR, take it further, but don’t walk away from something that you love if you really don’t have to. I know that for me, I have walked away from jobs in the past, because I have felt unsupported and undermined, and it’s soul destroying, because you know yourself how much you struggle to maybe even have made it to your desk in the morning or to your place of work, and then to have negative attitudes just makes everything so Much worse, because you don’t just have the stress then of broaching the subject with your manager, but you have added stresses as to whether people will believe you, you know, because they can’t see it. Is it true? You know, that’s my frustration, and I’m sure many other people’s frustrations, too.
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| Esi: And assuming Chinese whispers, I know that my experience of workplace Chinese whispers is that it starts off with nothing, and all of a sudden it’s something massive. So if one person has doubts, then it can, then it can go out to the rest of the organisation. So I I second you, I think in everything you’ve said, but I second you with, you know, for a manager to really, really, you know, believe that what the person’s telling you is how they’re feeling, and just because it’s not like that for somebody doesn’t mean that it’s not like that for somebody else, you have to take everybody on face value.
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| Michelle: Absolutely, yeah.
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| Esi: Is there anything else you would like to tell us? Michelle,
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| Michelle: what I would like to say from all of this is learn, or try and learn how to pace yourself. Think about what works for you, what doesn’t work for you, and strip back some of the bits that don’t work for you, so you can try and do the bits that you really want to do in life without feeling so exhausted all the time. I might that might sound a little bit confusing. What I’m just trying to say is be a bit kinder to yourself and remember that it’s you that matters ultimately, and yeah, just be kind to yourself and realise that you know, there are people out there who can provide excellent support to you. It’s just reaching out to those people initially to be able to gain that support. So just be kind to yourself. And if you need to spend the day in your pyjamas, and you need to spend the day in your pyjamas,
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| Esi: I think that’s a really good thing to end with. Thank you so much for your time. Michelle, if any of this has caused anything for you or you want to talk about this more, please feel free to call celebrating disability on 01256 578016, and look out for our next blog. You can use the hashtag part of me to keep up to date with all the latest blogs and all the latest blogs in the series. Thank you very much.
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