‘It’s an illness that can be invisible – and that’s hard too’

Catherine Doran with daughters Lucy and Charlotte
Catherine Doran with daughters Lucy and Charlotte

To an outsider I look perfectly healthy, but the truth is I live with Multiple Sclerosis (MS).

I was diagnosed in 2009 and it came as a shock.

I was just 27 and looking forward to getting married the following year.

The life I had imagined for myself seemed to disappear in an instant.

MS is a neurological condition for which there is no cure, and which has so many symptoms it would take me all day to list them, but they include fatigue, pain, pins and needles, bladder and bowel problems, balance issues, and trouble seeing.

But I live with relapsing-remitting MS and thankfully, as the name suggests, I do get periods of remission. However, the everyday challenges still remain even when I’m not in the throes of a relapse, with fatigue, pain and sensory problems affecting my daily life.

When you live with MS life becomes very unpredictable. Everything you take for granted is no longer set in stone.

That unpredictability is what I find the hardest part of MS. The months following diagnosis were difficult mentally, because the first thought that entered my mind upon wakening was whether I could move my legs and see though my eyes. Living with that constant worry takes its toll. I’ve had to learn to switch off that worry.

But losing my vision is one symptom I dread more than any other. I do get times when my eyes tire easily and my vision blurs, but I have not yet lost my sight and every day I thank my lucky stars that that’s the case.

Yet, despite the unpredictability I consider myself incredibly lucky to have been able to have had my children after diagnosis.

You cannot conceive while taking the strong MS medications that aim to reduce the amount of relapses you have, so deciding to have children meant not taking the drugs. It seemed like a tough decision at first but in the end it was easy.

My husband Joe and I wanted a family and we are so blessed to have two beautiful girls; Charlotte is now five and Lucy is three.

Now that my family is complete I am free to inject the drugs three times a week. It’s not something I like to do but needs must.

MS is also an illness which can be invisible, and that’s hard too.

People can judge without understanding what I live with. I’ve been questioned by strangers when I use a disabled bathroom or disabled parking space, despite having a blue badge on display.

When most people hear MS they imagine wheelchairs, but the illness impacts in many other ways that cannot be seen.

Having to find a bathroom quickly and frequently is one of the issues that impacted on me before my diagnosis.

It still does but with my diagnosis came help. I now take medication to help with my bladder issues and while I still like to know where the nearest toilet is, it’s not a symptom that keeps me at home as much as it used to.

Help came in other forms too, namely my MS nurses Fiona and Carole.

They have a wealth of information and despite a huge workload (they look after 700 people in the Western Trust between them) they are incredibly helpful and understanding when I call for advice and information.

I also found help at the MS Society, through both Terry McNamee in my local Foyle branch and from the Belfast headquarters.

The charity has been instrumental in helping me accept my illness and providing me with as much information as I need.

I am so passionate about their work that I now volunteer for them and I am the current vice-chair of the Northern Ireland Council.

Personally, I’m really passionate about helping others with MS and a huge believer in sharing experiences to help normalise the life you face with MS in it.

So I’ve set up a support group for women in my hometown of Derry~Londonderry. We meet on the first Tuesday of every month at the Derry Well Woman centre and just 12 months down the line there is already a strong set of women who meet to chat, support one another and find common ground with others living with MS.

I’m also heartened by the huge steps that have been made in research. Even in the seven years since my diagnosis there has been significant progress and I have no doubt that with more funding scientists will find a cure for this cruel illness in my lifetime. I have to hope that this dream will come true.

I believe MS has given me a new perspective on life. I don’t dwell on what might have been, I surround myself with positive people and I appreciate the small things in life.

My husband is my rock and constant supporter, and my family are instrumental in keeping my house going when I cannot, especially my mum Elaine and aunt Catherine.

The support I have is phenomenal, from extended family and friends too, and it is only with them beside me that I am able to live as well as I do with MS. And I do live well. It takes an army of people and medication, but I still do it.

l Catherine blogs at alifecopingwithms.blogspot.co.uk .

The support group meets at the Derry Well Woman Centre on the first Tuesday of every month from 11am-1pm. Everyone living with MS is very welcome to attend.