Updated: Apr 2
I'm a Fibromyalgia/ME/Chronic Fatigue Wellness Coach who can help you improve the way you're currently living with this condition, and ultimately move you towards recovery. Visit http://www.pamelarose.co.uk to read more about how I can help, and to read previous blogs.
I often hear from people who suspect that they might have Fibromyalgia or ME/Chronic Fatigue Syndrome, but for one reason or another they haven’t yet been given a formal diagnosis. Usually this is because they’re caught up in long waiting lists to see a hospital consultant. And this can make an already difficult time very worrying, often triggering unhelpful anxiety.
If you’re in that situation, I’d like to encourage you to let go of that sense of urgency and understand that there are things you can do while you wait for your diagnosis, which could start to deliver improvements to how you’re feeling. Falling into the trap of effectively hitting a pause button while you await confirmation, wastes time that you could spend so constructively.
From experience, there are two main reasons people are so desperately keen to have their illness confirmed:
1. To enable them to secure sick leave from their employer
2. To have absolute certainty as to what’s wrong and be able receive the necessary treatment.
The first point is important, yes. If you have a job and you feel your symptoms are severe enough to need some time off, your employer will want a note from a medical practitioner. Be aware that it could take a period of several months - sometimes over a year - to get a confirmed diagnosis, certainly here in the UK. But assuming your GP is familiar with your health history, most are happy to sign you off for a period of time, while you wait for your hospital appointment. Even during this period of lockdown that we’re currently experiencing, I believe most GP surgeries are offering phone/skype appointments.
If we put that first situation to one side and consider the second reason above, things get a little less satisfactory. Frustratingly, there’s actually very little ‘treatment’ that the NHS can provide. There’s no magic pill or even a clear indication of how long your condition will last. Which you can choose to look at positively or negatively! But more of that in another blog.
Some hospital clinics offer Cognitive Behavioural Therapy (CBT) - which can prove helpful to many. But other than that, you’ll often find yourself being sent on your way clutching a handful of factsheets and not much else.
So, if that’s the case, how important is it really to receive a formal diagnosis? My opinion is that it ticks some important boxes, but often delays people starting to take some very useful actions. So, my advice would be to continue talking to your GP and keep in that queue for hospital consultation - because, after all, it’s important to have any serious health conditions captured in your medical records. But use that waiting-list time wisely.
There are some very practical things you can start to focus on to help your symptoms. Indeed, from experience, the sooner you start to work on some of these important basics, the better. As I’ve covered in previous blogs, these include:
- finding smart ways to balance out your energy throughout the day
- ensuring those around you know how important it is for you to have the space to do this
- securing enough quiet time for yourself each day
- trying to stay as calm as possible and maintain a positive frame of mind.
It can also be very useful to join some sort of support network - an online Facebook group perhaps, or a physical group local to you that meets regularly (in non-lockdown times!). It can be very helpful to talk to others who are going through a similar situation - the fact that these conditions are ‘invisible illnesses’ really doesn’t help those around us to understand how awful we can often feel. So talking to people who can empathise can feel such a relief.
There’s also a lot of information online for you to read and digest. But I caution you to do so carefully. As with any topic, there’s a lot of great advice out there - but there’s also a lot that is useless at best, damaging at worst. One of the most important ways I’m able to help my clients, is by guiding them through the overwhelming amount of information and possible approaches out there, and carefully distilling them down to a worthwhile list of things to take forward.
So, in summary, yes there are reasons why it’s absolutely important to follow process and wait in line for your formal diagnosis. But please try not to fixate on that too much. Instead, focus on the very practical and sensible actions you can start to take straight away, which will hopefully set you on the road to improvement sooner than later. If you’d like to find out more about these actions, please get in touch. You don’t have to do this alone.
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