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What Fibromyalgia has taught me

Updated: Jan 23, 2023

It's no secret that I have chronic illnesses, and so I wanted to do a post around what having a chronic illness has taught me about life and myself. Before fibromyalgia kicked in for me, I don't think I could have ever fathomed the impact it would have, it really does seep into all aspects of life, but mostly the idea of being in constant pain just wasn't imaginable - and that makes sense because as humans we're not meant to be in pain all the time so why would it be something anyone could imagine without experiencing it first hand.

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Getting Diagnosed -

This process was so difficult for me, more difficult than it needed to be. It really highlighted that having a doctor who's on your side is important for the process, both on the toll it takes on your already impacted health but also your mental health. Unfortunately not having the backing of a GP can lead to difficulties - and this is something that is sadly far too common - where you might be dismissed or feel fobbed off, be told you're too young to be diagnosed with certain conditions, be told doctors don't like to put their names next to a fibro diagnosis, amongst so many other things that myself and others I know have experienced. Fibromyalgia is a condition that is still in need of more research and understanding, like so many other invisible, chronic, or rare conditions; Personally, I have been told by health professionals that many of their colleagues don't 'believe that fibro is a thing', basically they believe the pain we're experiencing isn't real! There have also been time where consultants have said that "it's a good thing you're crying as it shows that it's impacting you". As you can see, there can be a lack of empathy and understanding in the medical field when trying to access support for fibromyalgia via NHS.


I experienced many of these situations unfortunately, and I was left with the advice of, "we can focus on the symptoms, do your own reading online, it sounds like fibro but we're not going to officially diagnose you", I went to a private pain clinic, like many others with chronic pain end up having to do, and got diagnosed with fibromyalgia instantly as it was clear from the tests they did.


Now, my point here isn't to slander the NHS or the workers in the NHS; I absolutely love the fact that here in the UK we have the national health service and all the support and treatment it is able to offer us - I'd be so much worse off without it. I understand the NHS is understaffed, underfunded, and overworked, so the work that they do is even more difficult and draining than it would already be just doing the job normally, but the issues go beyond this. My actual point, is that it can be extremely difficult to access the support through the NHS and can require some jumping through hoops to get there or it forces people to go private and pay out of pocket.


Takeaways -

  • You know your own body, if something doesn't feel right, keep advocating for yourself to get the support you deserve.

  • Second opinions are worth doing, you deserve to be heard.

  • If possible make sure you have a good support network around you when looking into your health, as the process can be extremely exhausting.

  • Sometimes going private is worth doing - if it's affordable to do so - as it offers security and stability in a process that can feel so uncertain.

  • Do your own reading to get an idea of what could be going on for you; it can be helpful to know of different options and conditions they might be looking into. N.B. Try not to go down the google rabbit hole here, we all know where that can lead, but just to get a general idea.

  • Write down your symptoms, your thoughts, and any questions you might have for your appointments.

  • If you GP is refusing a diagnosis or test for any reason, ask them to note it on your records - this can sometimes lead to them changing their mind and giving the tests.


 

The impact of the diagnosis -

I hoped that having a diagnosis would allow access to more support and treatment, and whilst this is true, it has been so slow to put in place where some elements are still in waiting - the frustrations are still very real! Doing your own reading is necessary to looking after yourself, as well as finding a community to draw similar experiences from, share the frustrations of the condition, and to build each other up.


A diagnosis can allow you to access reasonable adjustments at work via occupational health assessments.


A diagnosis can potentially let you access income support or other financing supports to allow you access to aids, reasonable adjustments, and accessibility to day to day living.


Sometimes having a diagnosis for a chronic condition which has multiple symptoms can lead to difficulty separating out which symptoms are new and unrelated or which symptoms are part of your diagnosed condition. This can cause frustration with health professionals not necessarily looking into the new symptoms as thoroughly as they might do if you didn't have a diagnosis for them to fit under.


Takeaways -

  • A diagnosis isn't necessarily going to change everything, but it may offer you some opportunities for treatment and support that just looking at symptoms wouldn't offer

  • A diagnosis can lead to frustration on any new symptoms and whether they are related to your current condition or something else - again, be prepared to advocate for yourself.

  • It is not your job to educate those around you, but it can be useful to talk to those close to you about your own experience, what it means to you, and how it's impacting you.

 

Day to day living -

My day to day living has changed dramatically. I used to be able to work fulltime, travel an hour each way, do studying, as well as then have a social life, looking after the home, exercise. I really wish I'd have appreciated just how much I could do! I now work part time, for myself to be able to manage my condition around my work, slowed down on the socialising, and have had to find new hobbies & exercise that don't push my body too hard. Having fibromyalgia kick in cause a massive upheaval in my personal life, my working life, and my mental health too.


There is an element of grieving your old self as well as grieving what you had hoped your life would look like when you were able. It can be such a lonely feeling to have to readdress most aspects of your life and relearn who you are within that life with your condition. It isn't all doom and gloom, but it is really hard to come to terms with this process and what the condition means for you.


Each day is unpredictable, and that can take some getting used to. I never know how I'm going to wake up - whether I will be having a good day where my symptoms require little attention or management or whether I will wake up in a flare of symptoms and need to rest that day. It can be tiresome to try and arrange life around such unpredictability! This can be hard to explain around friends and family and can unfortunately cause some conflict as it may impact on plans you have or even just how you function around other people. I am very lucky in that most of my friends and family understand what I'm going through and have empathy towards me, but you do tend to find out those who can't get their head round the condition or put themselves in your shoes enough to understand what it could be like, and so conflict can ensue.


With fibro there can be a multitude of symptoms and not everyone's experience of those symptoms will be the same. Whilst it can be good to see others' experience with a similar condition, lessoning the feeling of being so alone in it all, on the other hand it can be hard not to compare yourself to others with the condition. We are all experiencing life differently, so their experience doesn't minimise or diminish your own - your experience is still 100% valid and is happening to you - trust yourself.


Takeaways -

  • Pacing, pacing, pacing!! This is now the bane of my life.... but it is one of the most important things for me to do in order to stay at a manageable level. There is a huge draw to doing everything you can on days where you might feel better, but then you end up having to spend much more time recovering or in a flare up of symptoms.

  • Therapy, and I'm not just saying this as a therapist, but it is that extra bit of support that can be refreshing when trying to navigate life and who you are with the condition.

  • Listen to your body. It might sound cliché and obvious but when you have a chronic condition you really do need to learn what symptoms you have, what can trigger those symptoms, what can help them, and what you need in each moment.

  • COMPASSION - compassion is something we can often offer others in droves yet when it comes to ourselves it feels alien, but having compassion for yourself really can ease the toll that the bad days have. Having this condition isn't your fault, yet you are left with having to manage it, and that can suck (to put it lightly). So spending some time on our compassionate voice can make a huge difference in acknowledging what you're going through, how it feels, and giving yourself kindness in that moment.

  • Having a range of hobbies and exercises that is different parts of your body is beneficial. Some days the brain fog might be too much but your body is feeling up for some yoga, light gardening, housework, knitting etc. Some days your body might be tired or in too much pain so doing something more cognitive based is better like reading, writing, chess, programming, puzzles etc. The worst days you might not be able to manage anything other than resting completely - for me these days mean having mobile games that take no thought, naps, gaming on PC or consoles that aren't too intensive, watching TV or films, or listening to music.

  • Gratitude as a practice has been really helpful, especially on days where the mental health dips and the resilience to it all is down. This isn't saying you have to be grateful or should be, but I've personally found that if I am able to name a few things that I am still grateful for in my life it can make a difference in my perception and facing the days.

  • Your feelings are 100% valid and you are still deserving of love, enjoyment & support. Having a chronic illness doesn't make you less than who you were before. You are still you.


Some useful links:


I will leave you with some chronic health memes 💚 If you have anything to add please comment below 😁





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