“I wanted to be there as much as I could”
Claudia was 11 years old when her dad Steve was diagnosed with relapsing remitting MS. They look back on how his diagnosis changed family life and their relationship.
Looking back to diagnosis
Claudia: When you were diagnosed with MS, I didn’t fully understand what that meant. But now I’m older and I understand MS more. So I wanted to talk to you about your diagnosis journey and how MS changed family life.
Steve: My diagnosis took a long time. It started with optic neuritis in 2001 which lasted about three months. They couldn’t confirm it was MS, even though they had suspicions. In 2006, I lost sensation in my feet and their heat sensitivity changed. I took another three months off work and was diagnosed in this time.
Adapting to life with MS
Claudia: How did you feel when you were officially diagnosed?
Steve: I remember it vividly. It was a shock and I felt saddened. It became this thing that was always in the back of my mind. Would I relapse? Am I going to be able to work? What’s going to happen to my family?
I was used to working, coming back home, and fitting back in. But everyone’s focus was on me. I was very much in the spotlight and people worried about me doing things I was fine doing before.
Claudia: How did you find that? I remember being mindful of you needing to rest more.
Steve: Yeah, I wasn’t used to that. I wasn’t used to being at home. I’m a qualified carpenter and I felt like I should be out doing things. But it was difficult. I could only take on small jobs.
Navigating MS as a family
Claudia: How did you feel about telling me and my sister?
Steve: Your mom and I didn’t want to “burden” you with the news. So we just told you I’d got an illness and I’d have to rest and do a bit less.
Claudia: I really struggle to remember that conversation. But I remember you and mom handling it well. What were your biggest fears about being a parent with MS?
Steve: We didn’t want yours and your sister’s lifestyles to change. And I wanted to be there as much as I could. But there’s always the risk you’ll push yourself too far.
For parents, it’s important to remember MS can change the way people look at you. But it’s not going to change the way your loved ones feel about you.
Claudia: Exactly. We still love you the same!
