Scars show life experience, they don’t cause me shame

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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 old. You know how it goes, your parents tell you NOT to ride your bike down a particular street because of the gravel, so what do you do . . . As the years have passed I’ve gained more scars. All from medical procedures, not from more bike incidents(!). …


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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 Wikipedia, as many of us do. Well, it seems that painsomnia doesn’t exist according to that giant of a resource of information. Even the most obscure thing I have looked up has a page, yet when I typed this query in I simply got a ‘the page painsomnia doesn’t exist’ message. …


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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 of others that I really (still) do have chronic illness conditions. Personally, amongst my long list, are fibromyalgia, vestibular migraine, interstitial cystitis and dysautonomia. All entirely invisible to everyone. Sit next to me on a train or spy me on my laptop in a coffee shop and you will be none the wiser. …


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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. …


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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 bladder. I wondered what on earth he was talking about, then realised I was answering yes to almost every question he was asking about my symptoms . . . …


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. …


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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 do to this today, albeit to a much lesser extent. Talking to others with MAV or vestibular migraine, I know this is not uncommon. Many of us ended up virtually housebound for weeks, months or even years. …


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To pin the shiny blue ‘Please offer me a seat badge’ to my coat or not?

This is a question that I ask myself almost every time I travel on public transport in London. It’s part of the morning routine alongside wondering if an umbrella would be a good idea, just in case, and checking several times to make sure I have my house keys. A few years ago an initiative was set up so that people with a disability can apply for a badge or card that states ‘Please offer me a seat’. Alongside this, certain seats on trains and station platforms became designated ‘priority seats’ with a notice stating that a person should give up one of these seats if someone with a disability requires it. …


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Most chronic illnesses bring a degree of anxiety with them. Experiencing symptoms and being diagnosed with a chronic condition often means entering into the unknown — we do not know for sure how we are going to experience the condition, how or whether it is going to progress, and how it will impact upon our lives.

Something I hadn’t anticipated when I first started seeing doctors about my multiple chronic illnesses, however, was that, on occasion, it would be those very doctors that were apprehensive about how to treat my unpredictable body, which then, in turn, made me apprehensive about my very being . . …


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

Those words, to most people, 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.

Well, no, perhaps not. Perhaps a celebration isn’t in order because, for some of us, it leaves us with more questions than answers. And, as most people with chronic illness would say, I would suspect, it is answers that we wish for. A diagnosis, management of our symptoms, treatment and help if we need it for our puzzling symptoms. Above all, recognition that we have a life-limiting condition which, to varying degrees, means that we have to adjust our lives to deal with the pain or fatigue, or other symptoms we deal with each day. …

About

Claire G.

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

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