Describing invisible symptoms: how to talk to family and friends about MS

Living with multiple sclerosis (MS) can be a very lonely place. It's wonderful to have the support of your team around you, but the road can feel like it's your battle to win every day. There may be days you wish to yourself 'if only I could really describe what it feels like.' Describing your MS can be particularly frustrating when you experience symptoms that are invisible to others.

Our MS Nurses spend their days supporting and talking to people about their MS symptoms, so we asked them to share their insights into how to communicate and manage these symptoms. They told us that the symptoms that tend to be hardest to describe are often the symptoms that fluctuate each day, making it even harder to capture how you are feeling on the actual day. In their experience, the top three symptoms are cognitive changes, fatigue and nerve pain.

Four techniques used by MS nurses to help describe symptoms

The power of pictures

We are all visual creatures and images are a great way of explaining tough concepts and problems like invisible symptoms. Images can make a story personal and help feel involved and connected by sparking emotional responses. Capturing an image to go with your symptoms may help you and others to understand where you are at. It may be helpful for you to begin the process by just simply drawing how you feel. You don’t have to be a brilliant artist, sometimes we feel like enormous splashes of happy yellow, other times a messy mass of red and grey. Just grab the pencils and start letting it out.

Using analogies

Analogies can be another good tool at helping people understand, process and emotionally connect. Analogies can assist by grounding concepts into the familiar for people. How many times have we heard people say it’s ‘worse (or better) than childbirth’, or it ‘feels like I have just run a marathon’.

Using the scientific or factual definition

For some people being direct and providing the scientific black and white version can be helpful to assist them in understanding.

Using other people’s words

Many resources have been created to help you find the right words and definitions. Google, Wikipedia (and if you haven’t yet heard of it, Chat GPt) all can help. Most of us are smart enough to filter out the inaccurate information and pick and choose from the wording to help cobble together a meaningful explanation for them. It's ok to do this, just do so with your internet information filters on.

How to help your loved ones better understand the impact of individual symptoms

Fatigue

Technical definition: Fatigue is a feeling of constant exhaustion, tiredness or weakness. It can be physical, mental, or a combination of both. Not to be mistaken with general sleepiness or physical tiredness, fatigue can happen suddenly and for no specific reason, and can take a long time to subside.

Visuals

• Feet stuck in mud
• A wall in front of you
• Like wading through quicksand

Analogies

• Your amount of energy is like a battery, people with MS have smaller batteries that have a different charge daily sometimes fully charged
• Spoons in a cup: each day you get five spoons in a cup for you energy quota, some days you have all five, others you only have three
• Like being hit by a truck
• Like a petrol tank in a car: energy gets gradually lower until there’s nothing left. Only rest and time will top the tank back up
• Like running a marathon every day
• Like trying to function with backpack full of bricks on your back
• When you have got a horrible flu
• Like bad pregnancy fatigue
• The worst hangover you’ve ever had
• Really bad jet lag

You could also describe fatigue as:

• Energy being burned up by instructions you must give your brain to do things like lifting legs, picking up objects and extra concentration
• No fuel in the tank
• A feeling of heaviness all through your body
• Out of juice

Cognition changes

Technical definition: Cognitive dysfunction (otherwise known as brain fog) can include difficulty with planning and problem-solving (executive functioning), concentration and attention, memory, such as recent events, information or tasks, remembering the right word to say (i.e., a word is on the tip of your tongue), processing information, such as instructions, visual and spatial abilities (for example, judging speed, distance and objects around you).

Visuals:

• Fuzzy head
• Foggy brain
• No straight lines in my head
• Brain full of clouds

Analogies:

• In your head it’s a cloudy day and can’t see clearly
• If there was a door of information going into my brain, half the information seems to hit the frame and bounce right off
• It’s like facing a cricket ball and the information goes straight through to the keeper and I didn’t even swing the bat
• Its like I’m operating on a DOS computer system, and I used to be the Apple Mac

You could also describe cognition changes as:

• Tip of the tongue
• Brain fart
• Forgetfulness
• Scrambled words
• The wrong word comes out
• Disassociation
• Thinking hurts my head

Nerve pain

Technical definition: Nerve pain is a common MS symptom that, if left untreated, can seriously affect your physical health and mental wellbeing. Like all MS-related pain, nerve pain can be acute (is usually short-term but can come back), paroxysmal (sudden attacks) or chronic (long-lasting).

Analogies:

• Body feels like it is in a vice
• Something crawling on or under your skin
• Walking with an ice block on your feet
• Walking on hot coals in bare feet
• Constant migraine in the muscle
• Hugged so tight you cannot breathe
• Nerves feel like they are on fire
• There are no straight lines in my head
• Hot poker driving into your skin
• Walking on broken glass
• Ants crawling on skin
• Constant water dripping down legs

Could also describe nerve pain as:

• Hot
• Burning
• Throbbing
• Searing
• Buzzing
• Electric bolts
• Fuzzing
• Fruit tingles in my arms
• Pressure
• Squeezing
• extreme sensitivity to touch

Find more information on MS symtoms.opens in new tab

Watch ‘My bike has MS’ on YouTubeopens in new tab, a great example of how to explain your symptoms to someone unfamiliar with MS.