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Invisible symptoms: the unseen side of MS

Many of us living with neurological conditions will be very familiar with the issues and challenges caused by our illnesses not being fully visible or obvious to others.

We found this very interesting article, adapted from the June edition of MS Trust’s monthly newsletter, which highlights some of the everyday problems encountered.

Many MS symptoms seem invisible to other people. They may affect you greatly, but no one seems to notice. This can be very frustrating and upsetting.

It can be surprising sometimes. You might be clinging onto your shopping trolley for support, feeling dizzy or fatigued but no one seems to notice. Another time, your lip is set and your expression is grim but do they ask how your pain is today?

So, why don’t people see some of the more visible signs of so-called invisible symptoms?

Which MS symptoms are invisible?

These symptoms may not be visible to other people: Not everyone will experience all symptoms, but many will be recognised by most living with MS.

  • anxiety

  • bladder symptoms

  • bowel difficulties

  • cognitive symptoms

  • depression

  • dizziness

  • fatigue

  • pain

  • sexual issues for men and women

  • sight problems

Why don't people realise?

There are lots of reasons why people around you might not notice your invisible symptoms.

They don’t know you have the symptom

People aren’t mind readers so perhaps we expect too much from them in figuring out what’s going on. Will they guess that a grim expression means that you are in pain? Or will they assume that you are just thinking about work or your dinner?

If they don’t know, is it reasonable to expect them to guess and guess correctly?

They don’t remember

Maybe you have already explained your MS symptoms to someone, but they don't ask you about them at a later date. Have they forgotten that you can't walk for long when they plan an outing on foot? Or are they being mean?

Many people focus on their own lives and worries and don’t have head space for remembering anything more. It’s not that people don’t care, they just don’t get around to thinking about it.

They don’t notice

You may feel that your MS symptoms are really obvious. So-called invisible symptoms can be so bad that they show up on your face, especially if you are in pain. Surely if you are holding onto something for support it must be a dizzy day or a fatigue day or both...

It can be puzzling that others don’t notice something is wrong. As before, it may be because people are in their own world and not looking outward enough to see what’s happening to you.

They don’t understand

Perhaps you’ve told them about your symptoms and they’ve remembered what you said. However, they don’t really understand how these symptoms affect you in everyday life.

It may be worth thinking back to when you were first learning about MS. Had you heard of spasticity? Could you explain nerve pain? These are quite difficult concepts to get to grips with. For most people, these things will be outside their personal experience. You might need to explain several times or in different ways so they understand how they affect you.

They put two and two together and get five!

People can be very quick to jump to conclusions. If you are wobbly on your feet walking up the High Street after pub closing time, they may assume you’ve had too much alcohol. If it’s 10am, they may still assume the same thing. The chances are that they will not consider MS balance symptoms as a possibility.

You are doing a great job of hiding it

Many people with MS prefer to cover up how much symptoms are affecting them. Some worry that they shouldn’t make a fuss. Others find that invisible symptoms are easier to hide and this can be helpful if they don't want to disclose their diagnosis to everyone.

Perhaps you are doing a better job of hiding your symptoms than you realised! If everyone assumes you are OK when you really aren’t, perhaps being more open about your symptoms would be better?

What could you do?

You could wear a T shirt that says “Can you see my invisible symptoms?” It might help!

On the other hand, you might like to:

  • Explain more about how MS affects you and emphasise that it includes invisible symptoms.

  • Add in gentle prompts and reminders like “You’ll remember that I can’t walk further than the High Street without a sit down, so can we stop at the bench on our way?”

  • Highlight when symptoms are playing up by being open about your limitations, for example, “I know I said I wanted to walk into town but my fatigue is really bad today. I’d like us to take the bus so I can use my energy for shopping once we get there.”

  • Try different ways of explaining your symptoms. Muscle stiffness may be an easier concept to understand than spasticity, for example.

  • Avoid hiding your symptoms so much. Being more open about the impact of your MS is not the same as making a fuss so perhaps some plain speaking will make a difference.

How can other people help?

If you are the friend, family or colleague of someone with MS, you could make a difference by:

  • Being supportive. MS is a complex condition where different people experience different symptoms some of which may not be obvious to you.

  • Avoiding saying “But you look so well!” Many people find this hugely frustrating as they may look OK on the outside, but they are feeling really ill on the inside.

  • Asking open questions such as “How are you today?” This allows someone with MS to choose from a whole range of possible answers from “really good” to “really struggling” and gives them the option to give some detail if they’d like to.

  • Asking if there is anything that you can do to help right now. You could follow it up by encouraging them to tell you when you can help in the future. It can be very reassuring to know that you can call on someone if needed.

  • Trying to learn about invisible symptoms so that you understand better.

  • Listening!

  • Accepting that invisible symptoms are very real to the person who is experiencing them.

To view the full article and to view other useful links please click here

Don’t forget that there is always help and support at The Brightwell whether that support might be from a member of staff, a volunteer or another Centre user – it’s always good to talk.

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