I felt alone until I found my local MS organisation

Luz María was diagnosed with MS 18 years ago when MS was still considered a rare disease in Guatemala. Doctors thought she was suffering with a migraine until her symptoms worsened. After an MRI scan and lumbar puncture, she received an MS diagnosis. Here, Luz María shares how she navigated MS challenges with the support of her local MS association.

Diagnosis

My name is Luz María, 18 years ago I was diagnosed with multiple sclerosis. At first the doctors told me I could have a migraine because my head hurt and I had blurred vision. But my symptoms got increasingly stronger. I began to lose strength and mobility on my right side. I even lost my sight temporarily. The doctors saw that it must be another type of illness. So they ran several tests on me, including MRIs and clonal bands on my spine.

The diagnosis took about six months. When they told me the diagnosis, I had never heard of it before. I didn’t know what it was. MS was classified as a rare disease and there weren’t that many patients.

Finding support

When my parents, husband, and I left the hospital we were all – what do we do? Where do we look? Where are we headed? We didn’t know much but knew that it was a progressive disease. I felt like why me?

It helped to know that there was Guatemalan Association of Multiple Sclerosis (ASOGEM), because I felt alone in the world. The first time we arrived at ASOGEM, I saw that there were many people with canes and wheelchairs but also people who don’t look sick. So that was shocking to me. Each of us has the same diagnosis, but we’re all different. That’s why it’s called the disease of a thousand faces, because it can affect us all differently.

That was a lesson for me, that wow if they can do it, I can too. I’m getting on board to see what happens. I started learning more, attending talks, the psychological support, the physical therapies. You realize you’re not alone and that you can do it. The only thing is to adjust your life to the disability you have. With MS you can have all the will in the world to do something, but sometimes your body just seems to ignore you. You have to try to cope and live your normal life as best you can.

Adjusting to change

Before my diagnosis I worked, I was totally independent, I had children to look after. After my diagnosis I stopped working as my job did not adapt to my illness. Everything changed, my whole environment changed. You are the same person but with a different condition. Now I try to maintain my independence and do my things in my own time. Not as quickly as I used to but still trying to live my life to the fullest.

Getting treated

In Guatemala MS treatments are very expensive. Most people diagnosed with multiple sclerosis do not have the full support of the Ministry of Health, so many people are diagnosed without medication.The main obstacle to accessing therapies that I face is sometimes being told there isn’t any supply available in the city.

Final reflections

Here in Guatemala, if your MS is not visibly noticeable and then it’s very hard for people to understand, so that’s really hard to face. There isn’t much empathy or awareness about MS. To anyone going through an MS diagnosis, I’d like to say that whilst it’s pretty tough and hard to accept, it’s not impossible. Everything can be adapted to our own rhythm. I hope MS research will continue to advance and help us lead full lives with a better quality of life.

Our thanks to Luz María and ASOGEM for this story. If you have an MS diagnosis story to share you can add your experience to the World MS Day map.