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When I first started to experience the symptoms of what later came to be diagnosed as multiple chronic illnesses, there was one thing I was adamant about: this was not going to be my life. Naively perhaps, I was sure that I was going to figure out the cause of my symptoms, find the right treatment and then be cured. Illness was going to be a blip in the road, not the whole journey of my life. …


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We live in a world where ‘healthy’ advice is given at every turn. People sipping a matcha latte, popping all the supplements they can fit in their bag and then going for a HIIT workout (with smoothie afterwards of course) and then suggesting you do the same . . .

Yet some seemingly ‘healthy’ pursuits can be just the opposite if you are living with mast cell activation syndrome (MCAS) as I am, or other chronic illness conditions. …


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“You no longer meet the criteria for a diagnosis of POTS (postural orthostatic tachycardia syndrome).”

To most people, those words would be a cause for joy. It is a huge achievement to no longer have a medical condition. To not be “unwell” anymore. Surely a celebration is in order, no? A big party, or at least a nice lunch or self-congratulatory trip to the shops for a little treat.

Perhaps not. Perhaps a celebration isn’t in order, because it leaves some of us with more questions than answers. Most people with chronic illness wish for answers more than anything —…


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‘Does it make you self-conscious?’ a doctor once asked about the barely perceptible scar on my lower abdomen. A scar that came about from a laparoscopy, and that is so faded you would almost need a magnifying glass to see it. I replied that it didn’t and she looked surprised by response. ‘Well,’ she said, ‘it’s in a good place, all hidden away’.

That conversation got me thinking a lot about scars. It was my first scar from a medical procedure, although I also have one on my chin from falling off my bike when I was about eight years…


The loneliness of chronic pain in the middle of the night

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Sometimes I feel as though there is a kind of language that spoonies (those of us with chronic illness conditions) speak, with words such as painsomnia probably only on our radar and not those of others. It’s like a sort of club that nobody wants to be a part of (or nobody I know anyway). Like much of the spoonie language, I had been living with painsomnia for a long time before I actually knew that there was a word to describe it.

What is painsomnia?

I tried to do a bit of googling for a ‘proper’ definition of painsomnia. I started with…


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Living with invisible illness often feels like shouting loudly into a void. Why? Because the invisibility of our conditions can lead to doubt being cast over whether we really are sick. Sometimes we even get sly allegations that perhaps we are faking, as though we have carefully crafted our lives into a giant ruse to trick everyone into giving us sympathy (or drugs, if they are a doctor) . . .

The forgetfulness, and not just mine . . .

Living with invisible illness is often about living with forgetfulness. Not my own, although brain fog is an issue at times . . . No I mean the forgetfulness…


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Staying at home has been a strange time for many us, and perhaps more so when you live with chronic illness. While we are often used to being home either entirely or more often than others, the climate in which we are doing so now feels very different.

This time has shown us a lot about how health is viewed by others. Sadly, it’s often been rather negative and hurtful. …


Boy, this is something I wish I had known how to do at the beginning of…

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When I first became unwell it happened without warning. One day I was pretty fine, the next I was thrust into my healthcare system trying to work out what was wrong. To begin with I was naive. I went along with whatever the doctor told me, but that didn’t always go well . . .

Advocating for myself has now became second nature. Some doctors have been fantastic and referred me to other fantastic doctors. In fact, some picked up on an issue before I even knew I had one. I won’t ever forget my cardiologist asking me about my…


Don’t prey on my pain to get to my cash.

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Scrolling through Instagram with a coffee in one hand and my phone in the other is often a fun pastime. I can catch up with friends, look at pretty photography and recipe ideas and generally just switch-off.

But that is on my personal account. The story is a little different on my Instagram account where I talk about my chronic illnesses. While that account has given me such a positive experience of connecting with others in a similar position, health-wise, to myself, it is also a place where I get targeted by companies trying to sell me miracle ‘cures’.

Being…


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For most us, an experience of being truly terrified is something we never forget. It is etched into our memories for years, maybe decades, perhaps even our whole lives. Fear can be so overwhelming that it changes our thoughts and feelings about particular people, places and situations. Ultimately, it may change how we live our lives.

Vertigo — a sensation of either you or everything around you spinning — did just that to me for many years. The attacks I experienced due to having migraine associated vertigo (MAV) changed how I lived my life for a long time. They still…

Claire G.

Chronic illness blogger at throughthefibrofog.com and on Instagram @through.the.fibro.fog

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