Perspectives of Fibro | Part Two
Updated: Feb 1
I have conducted a series of interviews exploring different perspectives of Fibromyalgia. From carers to business owners to friends of people with the condition.
The inspiration behind this was seeing how different everyone’s Fibro journey is, no one with this condition experiences the same thing. With Fibromyalgia already being a very misunderstood and unbelieved condition, these interviews are designed to show the many complex sides of the condition and the effects it can have on people living with it, and the people supporting them.
Part Two is an interview with my favourite fibro friend, Maisie Golding Cocozza. She and I have been friends for years and she has been a huge inspiration to me. After my diagnosis last year we realised we had even more in common and have been working on our own blogs to raise awareness of the condition. Our hope is to merge our minds and blogs to create a book one day! You can check out Maisie’s blog here: https://maisiesrandomreports.wordpress.com/
Could you tell me a bit about yourself and your Fibro journey?
I was diagnosed with fibro when I was 18, I had years of pure uncertainty as to what was wrong with me, from the last few months of my 15th year onwards I started to experience symptoms but had no idea what was happening with my body. I thought I was going crazy, I thought I was imagining things when all the tests came back negative every time yet problems persisted. Then I finally met a good GP who hit the nail on the head and sent me to a rheumatologist, a few appointments later and fibro was confirmed. It felt like a weight lifted at the time, but that feeling faded quickly - I felt left in the dark as to how to cope.
Back then there wasn't much advice on how to deal with fibro - every leaflet had a middle-aged woman on it and I couldn't relate to much of the material as I was younger than the target audience of these tiny leaflets. The NHS website at that time I can remember had one page briefly describing what fibro was and some ideas on what to try - today it is much more detailed. So the last nine years for me have been trial and error, learning by failing and having to pick myself up crash after crash and reading what I could, reflecting on each crash and trying to learn how to manage spoonie life. As social media and the internet has developed, so too have the areas for conversation, connection and finding comfort in reading about people going through what you are going through. Without the honesty of brave fellow spoonies, I wouldn't have come as far as I have.
When diagnosed you always search for the cause, with fibro though that’s easier said than done. I would say it’s been the hardest part of my diagnosis journey, one that is still ongoing… It's taken me awhile to come to an understanding of what may have contributed to my development of the condition. Lots of counseling and journaling, reflection and thought.
Recently, I’ve been talking with my parents and people who were around me at the time, jogging my memory of the symptoms that started to rear their head and when - fatigue, spasms, pains, fog etc. I’ve come to the understanding that my journey with my learning difficulty, Dyslexia, when I was younger has a huge role to play in this. I had a hard time with it throughout school, which led to needing to succeed, to prove that I was indeed smart. I hated failing and often did in my first secondary school as I found it was humiliating. I was badly bullied for it, leading to comfort eating which led to bullying and the nickname ‘Lard Arse’. I was the butt of every joke throughout my time in my first secondary school. Alongside this there were also hard things happening in family life, of which my family tried to create as much of a supportive and stable environment as they could.
My relationship with my education and food became unhealthy - I had a need to succeed at any cost and I hated eating because I was ‘fat’. When I moved to a new school, I was never bullied and actually loved my year group. The school recognised my Dyslexia and gave me support but it was too late to erase some of the scars, I had a fear of failure and being nothing but ‘stupid’. I studied all the time, throughout the night sometimes just to be on top of everything and succeed, grades became everything to me. This new school had given me the help that I needed, but the curriculum was still tough and I had a chip on my shoulder; I wanted to prove I was good enough. Looking back now, I was always good and intelligent enough, just exams were a tough hurdle for my dyslexic brain. I think I never would have locked myself away and studied late into the night, pulling all-nighter after all-nighter if more coursework was involved in assessments, I’m certain of that.
My relationship with food also remained strained as a late teen, if it wasn’t for my family ensuring on breakfast and dinner I probably would have been thinner than I was. I remember skipping lunch pretty much all the time at school or eating tiny amounts. I was also scared of eating anything with a high fat content and despised the guilt that came after eating things - I managed to keep it all secret, saying it was exercise helping me lose weight so quickly. Looking back now, I can see my relationship with food became complicated. It was all pretty unpleasant, hard to recognise, hard to talk about.
Mentally, I was experiencing severe depression and anxiety attacks daily. I put my body through a lot and developed a string of colds/flu, my immune system wasn’t great. I ran my body down, and so I have concluded, with the help of many therapists and doctors, that all of this combined pretty much triggered my fibro. I’ve never really spoken about it all until now, but think now more than ever is the best time to be open. God bless the people who raised me is all I can say; they supported me through it all, kept me eating and held me when I cried even though I didn’t always realise what was going on or why I was upset. They never put pressure on me to get good grades - all that pressure came from a scared girl who wanted to prove to herself and be attractive enough after years of being put down, wanting to show that she was more than what some ignorant and horrible people told her she was. Sad thing is, even though that young teen would have never believed you, she was always enough.
Can you tell me about the first time you used a mobility aid? How it made you feel, why did you use it when you did, did you want to use them sooner but were too afraid?
It's hard to pinpoint when this was, one of my earliest memories was out in a supermarket during my first year of diagnosis. My hip was giving me so much pain, it was just me on my own after college as I decided to get some more stationary for the purpose of colour coding my A-level classics class notes. I decided to get my foldable stick, a disgusting black thing purchased off Amazon. I pulled it out of my backpack, unfolded it to my height and began to lean on it, the weight of it hit me instantly. Not the weight as in sense of how heavy it was physically, but how heavy it was emotionally - I felt like there was something drawing attention to me, it made me feel extremely uncomfortable. It took a few steps but I started to get into the rhythm of using the stick, improving the physical pain but the feeling of unease wouldn't go away. I did see people looking at me, my anxiety started to spin out of control, knowing these people were probably looking at me thinking about how young I was, whether I looked sick enough to use it. I know now these feelings stem more from my own insecurities, really why should I care about what strangers think of me? They don't know me. At the time, however, I was so new to my life as a person with a disability, I had done months of self-doubt and medical doubt through diagnosis, and I am a person who does generally care about what people think of me (a weakness I continue to work on), so it's no doubt I felt this way.
People often talk about imposter syndrome with chronic illness, I know I've experienced effects of it - at that moment in the supermarket with my black stick, I felt like I was a fraud because I looked fine to anyone who could see me. No matter how much pain I felt at that moment I had a real issue with the fact that others couldn't see it, I looked like a normal young 19-year-old and therefore didn't feel I was 'disabled enough' to warrant such an aid. This, I know now, is because our society represents disability in one main way; someone in a wheelchair or an elderly person with a walking stick. I didn't fit into the stereotype and therefore disregarded my disabled label. When was the last time you saw a 20-year-old something in a television show or film with a walking stick? The stories shown to us in films/TV are of people who have grave accidents or debilitating conditions from birth that result in a permanent state of paralysis, just think about how many times we've been shown this same, tragic story. Disabilities and conditions are much more complex than that, the amount of long-term physical and mental health conditions is vast, but we are only really shown an extreme case of disability within the media we consume.
The lack of representing a variety of disabilities in a realistic way is damaging; I struggled a lot in my early stages of diagnosis with feeling 'disabled enough' because, within the societal norms in our world, what I experienced was not what people see as a 'typical disability', I was dealing with something invisible. Even though I had a father who had epilepsy and had therefore grown up around someone with a condition and saw the way he needed to live his life, because he had a brain haemorrhage and spent years in and out of critical care and he had battle scars on his head from his operations, I felt my condition didn't compare. It took a heart to heart with him about using the help I needed, from mobility aids and avenues of support available, to understand that I shouldn't be comparing his condition to mine, mine was completely different and personal and therefore came with its own set of needs I should use to make my life more manageable. The feelings of using that medically bland black foldable stick in the supermarket didn't go away after the first try, it's taken years of reminding myself my needs matter and therefore I have a right to use mobility aids to get past these uneasy feelings, and even then sometimes they still surface.
I have to add I think part of this is because mobility aids are just so medical in the way they look. Always in grey, blue or black practical colours you are used to seeing in clinical settings. Now, if I could get a stick that really showed off my personality and felt like a physical expression of myself, like the type of handbag I like to use as it matches my outfit, I would be so happy. I have been searching for years for something a bit more fitting for someone in their mid-twenties, something that isn't just practical but an expression of fashion sense, a fun part of me as well as something I need. The closest I have come is a floral fold-out model which doesn't really do the trick.
Can you describe what a ‘good’ fibro day looks like for you?
This can vary on what 'good' can mean. Staying out of bed for the whole day is the best a day can look, if I can have enough spoons to make that happen then I am having a really good day. I'll still be in pain, I'll still need meds, vitamins and herbal oils, but I feel more awake and feel productive. I'll have to remind myself not to go too far as I'll feel it the next day but for the most part it's been a manageable day.
Days like that are usually few and far between, I find more often than not my day involves an element of 'mattress management', whether it be just a lie down for half an hour or needing much longer than that. I would say, however, needing my bed in the day doesn't always mean it's been bad; I worked quite a bit on reframing how I feel resting. If I am allowing myself to get the rest I need but can also find the energy to get out after pacing well then it also is quite a productive day. If I have to stay in bed, I tell myself I am giving my body what it needs and that too is a good thing. I can’t always achieve this positive plaine of thinking, but practice makes perfect.
Can you describe what a ‘bad’ fibro day looks like for you?
The worst it can be is when I feel like I’m on fire and can’t find the energy to push past anything. I find it hard to leave bed, my pain is at a high level and my brain just cannot function well. I find the simplest tasks feel like mountains and will take every ounce of energy I have - cooking, showering, getting dressed. Sometimes I only get one of those things done, sometimes none of them get done; I have to ask for help - I’ve got better at doing that. Letting others cook me meals and help me with these tasks when I just don’t have the spoons. Days like this are hard to manage physically and emotionally, they really take it out of you.
That’s the worst it can look. I would say I would also class a ‘bad’ day as a day which involves quite a bit of mattress management, where you have to cocoon yourself in your bed surrounded by the things you need, working from your laptop and waiting for your body to feel well enough so you can sit in your desk chair. I would also say a day where the fog and fatigue is extremely disruptive and everything can be particularly challenging, sometimes you can push on through pain but it’s the other symptoms which you are not able to push through.
What is one thing fibro has made you grateful for?
I’m grateful fibro has given me real relationships. When you have a condition, often people can define you by that condition, therefore I have come to realise that relationships that matter to me are the ones where people see me as a person with a condition but whose identity is much more than just the label of ‘fibro patient’. These are the people who get that sometimes adaptations need to be made but they don’t make you feel disempowered by it, they work around you seamlessly, you can speak to them honestly. They don’t pity, they understand and want to be a great part of your life.
When you have relationships like this with family and friends it is indeed a real gift. Such honesty and understanding about life leads to a deep connection in which, not only do these people know the full you, you know the full ‘them’. It’s real. I have canceled on these people so many times, missed video chats because I’ve been asleep or just could not handle a call with fog and tiredness, they never complain. They never let it get in our way. Sometimes we can go more than six months without speaking but we pick up where we left off. That is true friendship.
Fibro led to me finding the most valuable connection I never imagined I would find, my relationship with my husband. When you develop a condition, you worry about how you will date, how you will find someone who will accept the real you. I had many failed relationships since developing fibro, many people missed the mark. Some I even fell in love with but they just didn’t get my needs and it went sour. When you have a chronic illness, you have to be honest about what you have and the other person has to be open to living with it and supporting you. There is no getting around that, it takes an immense amount of bravery on the chronically ill person’s part to bear all, even the bits you hate the most about yourself, and it takes courage and care from the person who may be open to getting into a relationship with you. It’s a hard fact to accept that this person will sometimes be your carer and a lot for that person to take on.
Dave was my friend for a year before we started dating, there was always chemistry between us, a spark. Over time, he got to know every part of me and I him. Every flaw, every life problem, hard struggles got shared between two university friends at our communal meeting place - Keynes Duck Pond, University of Kent, Canterbury Campus. He became the person that knew everything about me and he never pitied me, he helped me as a friend and never made me feel de-pendent. Our connection ran deep, our hearts followed. He knew what he was getting himself into, I knew what I was getting myself into and trust me I told him to turn around several times as the journey would be hard… he never did. We loved each other, unconditionally. We got engaged a year after being together, people always wondered if it was too soon, but I just knew and so did he. Dave and I have a pure connection, he came on this journey with me, he is my soulmate, my carer and my everything. If fibro hadn’t made me need to bear all my insecurities would Dave have shared his? Would we have connected so deeply? Would life have led me to him? I don’t think so. My search for a partner was particular and by chance I found a person who fit into my life more so than I ever could have imagined.
What is one thing fibro took from you? Can you tell me a little bit about it.
Fibro took away my dreams. I wanted to be an actress or work within film and television when I choose my options at GCSE. I had options mapped out in my head of how to make the most of every opportunity to make it to the stage and screen with the main aim of bringing characters to life for a living, telling stories that deserved to be told. It wasn’t about fame, I had a true respect and passion for dramatic art and media production.
I lost all of this with fibro. Acting isn’t much of a stable career anyway, so it felt even scarier for someone like myself whose stamina is unlikely to be up to the task. With the need to rethink I turned my mind to the more accessible side of creative arts. I studied drama, media and television production at university as well as got involved in student film and television; I realised I had a talent for the organisational side of things and research, important parts of bringing a story to screen. I turned my mind to breaking into the television industry, I succeeded at this for a time but this world is mostly freelance. The typical entry route is to be a runner, I found this hard. I managed to gain an internship which led to a few projects as a Researcher but this was slow at first, the world of a freelancer is unstable and without the ability to apply to onset runner jobs as a backup, I was stuck and still needed to pay rent.
I went back to university and gained a masters in marketing, fueled by my interest in social media, communications and research I did very well here. I am currently working in marketing, but have never given up on one day returning to the television and film world - perhaps melding my love of marketing with it all. Safe to say my career has changed many times, it has been restricted by the fact the world isn’t designed or open enough to disabled people.
I’ve seen television production companies, film makers and marketing firms work from home over the last year; my linkedin feed has been full of stories of adaptation and change. I know I am not the only chronically ill person in the world that hopes the lessons from the pandemic will not be forgotten, that this change lasts. The world has seen one can be a valuable team member from a home working space, the commute we are put through, which drains so many spoons, is not necessary. Let this hope this is a start to opening up the world to people with disabilities in a world that favours the able-bodied. Flexi-working is the future and a future that leads to less lost dreams.
How does fibro impact your social life?
Fibro has taken away a lot of freedom - freedom to get around, freedom to navigate your career without thinking about extra things, freedom to be spontaneous without careful planning. Everything is planned within the constraints of what you can and cannot do and there is no guarantee this will not change at the top of a hat. At the moment the world is moaning about being indoors so much, but this is much of our reality as chronically ill people. When I didn’t have fibro I could go out when I wanted, at the drop of a hat, I cannot really do this now and I certainly cannot handle too many outings in a week or even a month. Sometimes I do bust myself because I still want to live my life but I have to be ok with the fact that I will be broken for a few days afterwards. Those times are few and far between but sometimes you do just want to be a normal twenty year old; it comes at a heavy price. As we say to each other Beth ‘slut drops have consequences’, but sometimes you do just want to be out at a club with your peers doing 20-something things. Until I was ill, I didn’t realise how much freedom I took for granted that is for sure.
Going forward, there is lots more research being done into chronic conditions like fibro. In five years time, what would you like to see happen?
Like I said when I was diagnosed nearly a decade ago there was a real lack of information for fibro patients. Although this has changed and I am pleased to see much more information on the web, the NHS website for example has become much more detailed, I do think support could be much better for fibro patients. Often with treatment we are presented with pills, pills, pills as a solution but after trying so many painkillers and meds with terrible side effects which actually make things worse I see these as more of a plaster than a good approach to management. I would love to see doctors and health professionals really challenging a combination of approaches to dealing with fibromyalgia.
I have been so dubious about trying possible things and digging into the psychological side of having a chronic condition. I think I was afraid for a very long time that if I was mostly struggling mentally that would feed into the myth that it was all in my head - a scar from waiting so long for diagnosis. If I hadn’t been made to doubt the mental side of the condition so much in diagnosis and told it was ok to feel this way, I would have accessed mental health help a lot sooner. There were other hurdles too I couldn’t bring myself to for a long time, exercise hurt so much yet it was supposed to be part of my routine. How could I manage this when it took too many spoons? No one showed me how I could adapt it to my condition, I had to research this and find this out for myself.
This year, by fluke, I actually came across herbal remedies that have made a huge difference. I have tried many ‘miracle’ cures and treatments which claimed to help over the years - many of which were expensive and didn’t really help as much as I wanted too. It was with your help Beth and allowing me to try some of your M.C.C products that I have actually found something that really works. I’ve also tried acupuncture and massage - both of which had really encouraging results and I’m saving up for more sessions. All of this combined with the approach of general medicine and pharmaceuticals lead to a better ‘management mix’ for me.
I think patients need to be encouraged and given the confidence to look at a management plan with an open mind and from all angles and find a good ‘management mix’ for themselves. I would also like access to methods of management to be improved, being disabled is very expensive.
Of course the other thing I would like is more progression in research which I think is important for the discovery of improved management methods.
You were diagnosed with Covid-19 in November, can you tell me a little about what's happened since then? Has fibro gotten worse, or have other conditions raised?
It’s quite honestly been hell, I’ve been in one of the worst flares of my life. I have had the effects of long covid alongside heightened fibro ones, this is no surprise as long covid symptoms are very similar to fibro symptoms. I have found the uncertainty around the symptoms of chest pain and breathlessness difficult; I had to wait a while for test results which is understandable considering the level the NHS is being pushed to at the moment. For a while it brought back old feelings of waiting for diagnosis all those years ago, that similar worry for the future and not quite knowing how to approach these new things. There are marks of my time waiting for fibro diagnosis that clearly run deep, with them reawakened I know I am going to have to seek some mental health guidance for this.
Eventually my tests came back clear which I’ve been told probably means my body is just recovering and my fibro flaring. That was a relief because I hope, just as when you come out of a nasty flare, that it’s a case of rest and recovery. However, I can see it taking a long time. I am nearly two months in and I have read of people suffering with long covid effects for up to seven months. I am finding my fatigue and pain are at new highs. My sleep pattern is out of control. I have to be physically exhausted to sleep through the pains, especially my chest, and then I sleep for around sixteen hours sometimes. I’ve been working hard to try and establish a routine and get some important aspects of managing my condition into my life but I’ve failed thus far - I keep crashing out. It’s just a sign I need to keep taking it slower than I would like.
However, like always I am trying my best to listen to my body, seeking the help I need and using all I have learnt over the last nine years to my advantage. I will do my best to be patient with myself. I do however wonder how many able-bodied people are now experiencing chronic illness symptoms for the first time, my heart goes out to them as we all remember what that was like. I do think, although some are recovering, some may not recover. We all know the link between viruses and trauma and chronic illness, maybe we’ll see a rise in chronic illnesses as part of the pandemic; only time will tell.
I do want to say the hardest part of having Long covid is the appalling level of support for the sick from the government. I have had to live off statutory sick pay for so long while I try and recover; that is £95.85 per week, £383.40 per month. It’s nothing to live off, doesn’t even touch my London rent and I count myself lucky Dave has a job and recovered from covid quickly to continue with it and we had savings. It has not been easy and the financial stress is hardly helpful when trying to get better. This to me is another example of how society treats those with illness, as a problem. If you are disadvantaged, you don’t seem to matter right now. The government does the bare minimum to help us - we know this through people’s experiences with PIP and DSA. It’s just disgusting to me that this sick pay amount is classed as ‘support’. Unlike the Prime Minister, we don’t all have a £150,000 a year salary to fall back on when we self-isolate and recover from the virus. There are so many people going through this right now, it’s scandalous that there has not been more talk of it in the commons. I even wrote to my local MP (Janet Daby), The leader of the Opposition (Sir Keir Starmer) and the Prime Minister on the issue but to no resolution.
So in short, it’s been a hard experience that has not only been hard in terms of fibro, but shown a light once again on the inequality and ableist attitude that runs deep within the UK’s ‘support’ system.
With cases of long-covid rising, can you tell me how that makes you feel as someone who has had very similar symptoms for longer?
It is hard not to have a tiny bit of frustration at society. Although the existence of long covid isn’t understood by all, I do feel like there has been a new level of understanding in symptoms like fog, pain and fatigue. Having dealt with these symptoms for so long with fibro it’s hard to see it accepted on a wide scale so quickly just because so many people are having these experiences they cannot ignore it. It seems like the same story doesn’t it - until a wider amount of the population experiences something, it feels like it’s ignored. I can’t help but think of all those doctors throughout my fibro diagnosis who were unhelpful and made me feel like it’s all in my head and what it did to me mentally. I also can’t help but think of all the casual ableism I have experienced throughout my life and the misunderstandings I have faced… the phrase ‘you don’t look sick’ for example, is one I have heard many times. Basically, you just can’t help but think of all the mental pain you could have been spared if people were as open to illnesses like fibromyalgia in the first place.
Those feelings aside, what I do hope is that this leads to a wider acceptance and understanding of ‘invisible’ illnesses. That indeed you can be in a lot of pain, your brain can be clouded and your body exhausted but look ‘fine’. One hopes there is a change of attitudes and better support is devised, not just for long covid patients, but the wider chronic illness community.
I want to point out I have nothing against people who were able-bodied and now have long covid. I feel for them, my frustration is not with them, just at how it’s taken a pandemic for people to believe you can look fine but be ill when our conditions have existed for so long.
Describe fibro in 5 words.
A neverending rollercoaster of emotion.