Symptom Management

Psychological Support in MS

By Hannah Morris-Bankole

Receiving a diagnosis of multiple sclerosis comes with a whole bunch of motor, sensory, and cognitive issues, but it also comes with the less obvious psychological symptoms too. Not only can things such as anxiety and depression be symptoms of MS, but surely it is no surprise most of us will experience psychological symptoms in response to the difficulties we have to deal with in adjusting to our condition. I personally found it took me two years to finally accept that I had MS. I never expected it to be such a long process. But then, just as I thought I’d mastered it, something would happen that reminds me that I have MS.

It might be the appearance of a new symptom - or worse, a relapse - or even just something as simple as a TV program where a person on it has MS, or attending your annual neurology appointment, all of which provide that subtle (or not-so-subtle) reminder your MS is still there. I tend to find that when these things happen, I’m pushed a step back. These are the times when I need some extra psychological support.

Back when I was first diagnosed, I could have done with some formal kind of psychological support or counselling – a safe space to just let off some steam. I needed to talk to someone I didn’t know so I could be completely honest about my feelings without burdening loved ones. However, I was not offered it and I certainly wasn’t going to ask for it either. I just wanted to go into hiding for a long time, but yet, ironically, I was yearning for some kind of support in dealing with the whirlwind of emotions I had been forced to embrace all of a sudden.

I received counselling recently for bereavement of my stillborn baby earlier this year. I didn’t ask for it, it was just a part of the care provided following the event. I wish counselling was provided in this way as a normal part of the diagnosis process with MS too because I was not brave enough to ask for it as much as I knew I needed it. Even though the initial shock and process of adjustment is largely over for me nearly eight years on since I was diagnosed, I do feel the need for a bit of psychological support in relation to my MS every now and again, especially during those times when thoughts of my MS come to the fore. I definitely need it, but perhaps on a different, and less intense level. Now I’m content with seeking needed support from others with MS in online support groups. Talking from behind a screen facilitates my introverted nature and allows me to talk to those who know all too well about MS; they just get it.

This is the kind of support I need now. This has made me realize, much like the physical experience with MS varies so greatly form one person to the next, the need for different types of support also varies widely, not only between individuals, but within the individual too over the trajectory of their illness. Some people prefer face-to-face support, whilst others prefer it from a distance. Some prefer it from a more formal source, whereas others prefer it on a more informal level. Sometimes they might prefer one and other occasions another type of support is more suitable. Essentially, most people need some kind of psychological support to some extent at some point, but everyone’s needs are different.

Even though most people with MS need or want some kind of psychological support, many are not offered it, or even aware of what’s available to them. Here are some tips on finding and choosing the support that is right for you.

Many different types available

It’s not uncommon for the term ‘psychological support’ to be used synonymously with things such as ‘counselling’ and other more formal types of support. However, support can also be obtained from less formal sources such as MS nurses, MS organizations, and even other people with MS, as well as your own friends and family. All provide psychological support in different ways.

Research what’s available to you

With this in mind, you can look into what’s available to you locally, both online and face-to-face. You most likely have access to mental health professionals, MS nurses, and MS organizations in your local area and even if not, there are an abundance of MS support groups online.

Have an open mind

There can often be stigma attached to attending counselling or seeing a psychologist that can prevent people even seeking this type of support. This is unfortunate because often people don’t realize how beneficial this type of support is. Even if someone finds it is not helpful or even inaccessible, there are other options available that perhaps carry less stigma, such as online support groups or one-to-one email or telephone support from MS organizations.

Tell your friends and family what you need

If you are not looking for more formal types of support from a counsellor or the like, but still need some support from those close to you, then try talking to them about how they can support you. It can be difficult for someone who has not had the experience of living with MS, especially the invisible symptoms, to understand what it’s like and therefore how to provide the best support.

Identify your own individual psychological support needs

With the MS experience being so varied, so are our support needs. Take your time to think about how you want the support provided, from whom, and what exactly is it that you need support for. This will help you to narrow your search and pick something that is most appropriate to your needs.

(Last reviewed 1/2024)