MSer and research student Hannah Morris on the psychological impact of diagnosis
Loss of feeling, loss of eyesight, loss of taste, loss of mobility, loss of balance and loss of energy. These are some of the physical losses I experienced one year prior to diagnosis of multiple sclerosis (MS).
Once diagnosed I was able to get rapid treatment for these things which was great, but it didn’t give me back the losses I faced psychologically. The treatment I was offered would help to restore physical function and even prevent it in the future, but no pill, injection or infusion could help to restore the psychological losses I faced.
To the medics, their job was done once diagnosis had been given and treatment had been administered, but I’d walk away having to deal with a whole lot more than a pill could fix.
Medical treatment gave some consolation for the physical loss and to some extent for the emotional loss, in that I felt reassured that there was some hope, but that was not enough.
Thrown in to the pits of uncertainty, loss would be something I would have to face for the rest of my life; not just physical loss but psychosocial loss also. My role as a mum, a student, a care worker, and a friend amongst others became threatened as I felt unable to fulfil my expectations. My dreams were shattered and my hopes were lost. I had lost everything that I was striving to become. A loss that was bigger than any physical loss I had faced thus far.
Not only did this debilitating condition challenge my capabilities, and future plans but it challenged my sense of self-worth. It might be argued that a pill can actually fix the feelings that are evoked as a result of this and to some extent this is true. But, as with treatments for the physical symptoms, this only treats the physiological consequences of such feelings when something deeper is actually needed to treat the psychological symptoms beyond this.
I felt alone, like perhaps I was the only one who was still feeling the pinch of this illness even after the physical symptoms had been treated and subsided. As a result, I didn’t even think to reach out for support when really I needed it at this time. It was only some years on, after reading the psychological literature in my years as a student that I came to realise that psychosocial loss is in fact a normal part of the MS experience and is often the cause of psychological symptoms such as anxiety and depression. I wasn’t alone after all and I had no reason to have felt this way throughout the earlier years of my diagnosis.
It was only after some years that I realised that there many effective treatments and support available to deal with the psychological losses and consequences of MS. It is unfortunate that such support and treatments don’t seem to be offered or made available to people with MS unless they go looking for them. Furthermore, given the diversity of the MS experience not all approaches are appropriate for everyone so even when they offered they might not be suitable to everyone in meeting each individuals needs.
Ultimately, it is normal to experience ongoing sense of loss in MS, but it is also something that can be made easier to deal and cope with through the appropriate type of support.
As part of my research I am hoping to support others in the same situation and invite you to join me in this endeavour by having your say in what would help you.
If you are happy to help out then you can complete this online survey here by clicking the ‘start’ button at the bottom of the page.
Or you can go directly to the survey by clicking here