Shame, fear, pride, doubt and “feeling like a lesser person” were among the reasons why a young mother kept a 13-year-old secret since she was diagnosed with multiple sclerosis.
But after a difficult journey of self-acceptance, involving therapy, 36-year-old Ilona Debattista is now choosing to share her story in a blog – My MS Journals – aimed at supporting others. Her message is: you are alone, reach out and get help.
Ilona was 23 when she was diagnosed with multiple sclerosis (MS), a lifelong condition that can affect the brain and spinal cord. For many years she felt alone.
“Besides the physical struggles, I think what killed me the most was the loneliness. Feeling isolated, even when I wasn’t, because I always felt no one else could understand me, up until I started going to therapy… Now with my blog my aim is to raise awareness about MS and what it’s like to live with an invisible disability. Primarily, I want readers to know they aren’t alone,” she says.
When her journey with MS began at the age of 23, she started experiencing constant pins and needles in her hands as well as extreme fatigue. Her doctor told her it could be MS or a virus after ordering an MRI, lumbar puncture and blood tests. The MRI showed two small lesions in her brain but the lumbar puncture was clear – which meant MS wasn’t diagnosed.
It was only after a couple of relapses – each lasting eight to 12 weeks – one of which involved her losing vision from one eye, that she got the official diagnosis.
“When they first told me there was the possibility of MS, it felt like the end of the world. But when they actually diagnosed me, it was a relief. Because I knew deep down I had it. But friends and family kept hoping that maybe I didn’t have MS. That ray of hope for them was in reality only killing me inside slowly,” she says.
Now that it was official, Ilona and the people around her had to learn how to live with MS. She soon learnt that the “invisible” nature of the disease meant people did not understand it. They did not understand her.
“MS, like other invisible disabilities, doesn’t help people understand what you’re going through. People think: you look fine, so you’re fine. But the reality is we look fine because we fight to look fine,” she says.
As Ilona battled to look fine on the outside, she was not always fine on the inside.
Friends and family kept hoping that maybe I didn’t have MS. That ray of hope for them, was in reality only killing me inside slowly
“In in my case, MS impacted me on two opposing extremes. First, it impacted me in the worst way possible, but that eventually led to now, which is the best way possible. The worst includes a lot of milestones and important times in my life that were either tainted or cancelled… The day my husband proposed we were abroad and I barely had the strength to walk to the bridge he wanted to propose on. I kept begging him to go back to the hotel and he insisted we walk a little further. The day I chose my wedding dress I was blind from one eye,” she says.
As this impacted her mental health, seven years ago she started going to therapy – the beginning of a long journey of acceptance.
“It helped me change the way I wanted to live – I knew the changes I had to make,” she says.
Almost four years ago, Ilona became a mother to her son Jax. The first year was a big struggle.
“Becoming a mother impacts everything. I feel it’s almost a responsibility to be healthy and stay healthy for my son. I feel like it’s a responsibility to stay alive, but I think most parents can relate to this,” she says.
Back then, the new mother wanted to do it all and keep working at the job she loved. Therapy helped her see what she needed to do. She left her job and eventually started studying to become a psychotherapist and is about to start her final year, she says, adding that she is also finally on the right medication.
Over the past two years she has been thinking of starting a blog. COVID-19 was the push she needed.
“During these trying times, with being labelled vulnerable by society, I decided there’s no better time than now because I think people need this now… I wanted to create a space where I can connect with people and help them by sharing not only my experience but also some of the things I’ve learnt in my years of training as a therapist.
“My message is: you are not alone. And I say this not just to MS sufferers but sufferers of other disabilities, sufferers of mental health, as well as the families of those suffering, mums, dads, spouses, siblings. You do not need to do this alone. Reach out and get help, whether it’s through therapy or friends or family,” she says.