What do you say to someone with #Fibromyalgia?…..

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One huge difficulty of living with #fibromyalgia is it’s an #invisible illness; others assume you are well because there’s no physical evidence of being ill.

In my personal struggle with fibromyalgia this single fact has caused me the most stress over the last 15 years.

You may ask, if you know someone or meet someone with fibromyalgia. What should you say?

Show them compassion and listen to them. Just taking the time to talk about it in a non judgmental way will help.

Let them know you want to help them if they need it.

It’s difficult to ask for help when you are struggling.

Give an open invitation to join in or not if it’s a bad day.

Not feeling under pressure to attend, as symptoms come and go without any warning. Being included is important and can help to distract the mind from pain.

Try to avoid this….

I have Fibromyalgia.

When I meet people, l explain this

They think it’s a fake illness,

Or I’m lying,

because:

I appear normal

They say,

You don’t look ill’

I’ll reply,

You wouldn’t be able to see anything…

It’s an invisible illness,

It doesn’t make me grow two heads 👥

It’s not a disease that turns my head bright purple 👿

Or make my eyeballs enlarge to the size of plates 🔘

As ridiculous as these examples are….

I ask

Would you believe me then?…

And

What don’t you believe?…

Why do I have to constantly prove the validity of my illness

with cross questioning?

Such as…

Perhaps it’s because you are stressed?….

It’s all in your head….

You’re imagining it….

It can’t be as bad as you describe….

All of the above questions are not helpful;

I thought you had more intelligence than that.

So, What is fibromyalgia?

Briefly, it affects the skeletal muscles throughout the body, causing varying degrees of pain.

The pain ranges in severity from day to day and it is affected by temperature,

stress

and the amount of physical activity carried out.

Fibromyalgia sufferers commonly experience a range of different types of pain.

The pain can range from a sharp stabbing pain,

an ache

and a burning pain.

Other symptoms that can be experienced are

fatigue,

poor sleep quality,

stiffness,

IBS,

headaches,

cognitive problems

“Fibro fog”,

depression,

dizziness,

anxiety

and painful periods.

The NHS description of fibromyalgia gives more information about the condition.

If you have just been diagnosed and are trying to find links to support groups and the online community. Have a look at the organisations below and also Facebook groups.

UK Fibromyalgia is a brilliant site that covers a wide range of information about fibromyalgia.

Also

Fibromyalgia Association  is a registered charity that provides information and help to sufferers.


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