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'It's hard to tell people that you have multiple sclerosis'

Antonia Rubio.
Antonia Rubio. / SUR
  • Antonia Rubio, The president of Ayfem says many people are afraid to say that they have the illness, especially young people, because they fear they will miss out on job opportunities

Antonia Rubio is the president and founder of Ayfem, the Association of People with Multiple Sclerosis and their Families, of Alhaurín de la Torre. It was created in 2017 to raise awareness of the illness. Antonia says people are often afraid to admit that they have it after they have been diagnosed, especially young people, because they are scared they will miss out on job opportunities.

How did the association start?

I started Ayfem in 2017, after many years in which I had turned my back on the illness. When I was 40 I had a very serious episode. That's when I started to meet other people with the same problem, and I worked with associations in Madrid. We even did the Camino de Santiago. I saw there was a way of keeping the spirit alive and being able to help other people who were like me. That's when I created this association, to bring together those in the same situation. We now have a bigger network, although there are people who still don't want to admit that they have this illness. It's hard to do that, especially if you're young, which is when most people are diagnosed. They are afraid they won't be given job opportunities. The association is there to encourage them and their families, because that is something very important. I suffer from this illness, but so do my husband and my children. They have to modify their life in order to look after me when I am ill.

What did it mean to you, being diagnosed with multiple sclerosis?

I was diagnosed with this illness when I was 25. I didn't accept it. I didn't want to tell anybody. At that time, nobody knew anything about multiple sclerosis. I was told that I wouldn't be able to have children, that I would have to live in a bubble, but I said I was going to be stronger than the illness was. I withdrew into myself and went for 17 years with no treatment. I only went to the hospital when I was having a bad episode. When I was 40 I had a very serious one, and that's when I started to take medication.

What projects does the association have at the moment?

Many of our members don't leave their home, because they are afraid of catching the coronavirus as we are autoimmune. As we can't organise any events for people to attend, we have created a series of online meetings each month, where we talk to experts on neurology, nutrition, psychology... it is really helpful for us. Coexistence with others is very important so nobody feels alone. Next year, we want to organise a photography workshop.

Is there still a lack of awareness about multiple sclerosis?

Yes, there is. The first thing people think is that it is an illness 'of the bones'. Someone with multiple sclerosis needs to know that they are not alone and they don't have to be afraid. You have to carry on. It's really important for them to find support and I always invite anyone I meet with multiple sclerosis to join our association. The only condition is that you need to be positive. It's also important to find an activity you like: flamenco has helped me a great deal. A year ago my legs were shaking and I couldn't coordinate my hands. Now I have taken part in a competition and passed through to the Andalusian stage. It is very hard to take that step, you have to be really strong to do it, but you can overcome everything when you try.

What are Ayfem's objectives for the future?

We want people to know more about us. We are preparing a short documentary with all our members, to raise awareness. We have a lot of energy and are very keen to do things. Our biggest project for the future is without a doubt to do the Camino de Santiago, with financial help so we can adapt the trip to the needs of our members.