Living with Multiple Sclerosis in London and California

30 May 2019

Multiple Sclerosis (MS) is one of the most common diseases of the central nervous system and more than 2.3 million people in the world currently have MS. Kiss Goodbye to MS is a global campaign aimed at raising funds for vital research and looking for a cure

The treatment of MS varies across the world and everyone who is suffering has a different diagnosis story and a different experience. MS is unpredictable and some people may not feel the effects for many years while others may be severely debilitated quickly. 

Liane lives in London and was diagnosed in 2018, she got diagnosed within a week. Desiré lives in California and was diagnosed 10 years earlier in 2008, her diagnosis took almost 4 months. Initial symptoms that lead Liane to seek medical help at her local practice and then A&E was blurred eyesight along with loss of balance and weakness on the left side. Desiré visited ER every single day for a month when she was suffering from numbness across her body and it was only at the peak of her symptoms that she got referred to a specialist but still did not result in a diagnosis.

For both of these women being told they had MS was a shock and neither had a strong knowledge of what MS was or would mean for them. Desiré recalls “one of the hardest parts of my diagnosis was that I could barely find anyone to connect with, it was impossible to find anyone my age who had MS too, I felt so alone”. Liane found information online following an uninformative diagnosis from a junior doctor, “luckily the MS Society website was very helpful”. Despite the initial blow and sadness at the diagnosis of a life-changing disease, both women bravely thought about how they could inform their networks, spread awareness and raise money to go towards finding a cure.

Liane set up a Facebook fundraiser for her birthday and asked friends and family to raise money for Kiss Goodbye to MS. Liane found that “when I told my friends and family using my Facebook fundraiser, there was a lot of shocked responses but a lot of support”. Desiré discovered support networks that continue to grow when sharing her diagnosis through social media. One of the main reasons Desiré is vocal about her story is that she believes the conversation has to start somewhere, bravely she is okay with sharing her story with everyone. Desiré declares “I want to be the resource I saw was lacking when I got my MS diagnosis”.

Both women are young and face judgement due to their invisible disease and their need for extra support. Liane opened up about facing criticism and hostility from people when using a wheelchair which makes her dread the day she needs a Blue Badge as she knows she will have to deal with comments and stares. Desiré talks of her struggles “we are often fighting a silent daily battle with our bodies, and because those battles are invisible it is hard to get people to listen to us”.

Desiré and Liane have different stories from different countries about how they got diagnosed but both women have talked about the struggle to come to terms with their diagnosis and feel grief, distress and vulnerability due to MS. Desiré describes the grief, “for most of us living with MS are dealing with the grief over what we feel we have lost, the life we could have had without MS, and I don’t think that ever goes away”. Despite being in different countries that part of their story is similar, what is also similar is their passion to be strong, honest ambassadors for Kiss Goodbye to MS.

Both women are incredibly brave and determined and have shared their stories as a way to spread awareness of MS through the global Kiss Goodbye to MS campaign. Kiss Goodbye to MS is a global campaign with 13 countries raising money to fund research into the causes of the disease and to hopefully find a cure. The campaign also funds access to treatment which can have a dramatic effect on countries where treatments are not readily available or affordable. In May countries around the world are uniting to raise funds to cure MS and show the world they are united by this cause.