Secondary progressive MS

What is disability?

People who are diagnosed with secondary progressive MS may worry about becoming disabled. Disability means different things to different people. What one person considers disabling may not count as disability to someone else. Much of disability is not about the person but the environment in which we all live. For example, if a shop has steps, then it will not be accessible to all. If products in the supermarket have labels with tiny writing, then not everyone will be able to read them.

There are various definitions of disability. A dictionary would typically say that disability is any result of having a condition that limits what you can do. For example, if you have a bit of numbness in your fingertips, it could make it hard to put in your earrings. Some people might class this as disability but many wouldn't.

The Equality Act covers people with MS from the point of diagnosis even though they may not see themselves as disabled at all.

The public's idea of disability can be different again. People often look for outward symbols of disability like walking sticks or wheelchairs. This is not surprising, given that the symbol of a wheelchair is often used to represent disability.

Will I become disabled?

You will have your own way of thinking about disability and it will be up to you how you define yourself. MS may affect what you can do but only you can decide if this is disabling. As the symptoms of MS vary, you may have different views of yourself at different times.

It can be worrying to be told that disability is likely to increase from the beginning of your MS. However, this is not always a fast or a continuous increase as there can be times of improvement and times when symptoms remain the same. As with all types of MS, symptoms tend to be up and down from day to day and each person's MS is different so no one can say how much your MS might, or might not, affect you.

You will have support from your MS team and many symptoms can be improved by trying different treatments. For some activities in daily life, it can be a question of doing the same thing but in a slightly different way. For example, to help manage fatigue, you might find it helpful to sit on a stool or chair to do the ironing or prepare food.

Getting support

Although the word 'disability' may be uncomfortable or feel inappropriate, it can help you access support. It may be particularly helpful at work or when considering whether any government assistance or financial benefits apply to you. There is no countrywide scheme to register as disabled so each benefit has its own definition of disability.

At work, the Equality Act covers everyone with MS and requires employers to make reasonable adjustments so that you are not at a disadvantage because of any difficulty caused by your MS. Examples of reasonable adjustments may include allowing you to return to work by gradually increasing your hours or, if heat makes your symptoms worse, allowing you to sit in a cooler part of the office. You may not need any adjustments or protection but it can be good to know where the law stands.

Similarly, you may find that you are eligible for some government benefits especially if you have difficulties with walking or the activities of daily life. Possible benefits include Personal Independence Payments and the council-run Blue Badge scheme which gives access to reserved parking places.