When someone in your family gets diagnosed with sclerosis-whether it’s multiple sclerosis, primary progressive sclerosis, or another form-it doesn’t just change their life. It changes everything around them. The fatigue, the muscle stiffness, the balance issues, the brain fog-they don’t stay in one person’s body. They ripple outward, touching how meals are made, how conversations happen, how weekends are spent, and even how love is shown.
It Starts With the Little Things
You might not notice at first. Maybe your partner used to walk the dog every morning. Now they need to sit down after five minutes. Or your parent used to help with homework after dinner. Now they’re too tired to stay awake past 8 p.m. These aren’t dramatic moments. They’re quiet losses. And that’s what makes them harder to talk about.One mother in Melbourne told me her 8-year-old started doing the laundry because ‘Mum’s arms hurt too much to lift the basket.’ The kid didn’t complain. She just did it. That’s not responsibility-that’s adaptation. And it’s common. Kids pick up on changes before adults admit them. They start cooking, cleaning, managing appointments. They become unofficial caregivers before they’re old enough to drive.
Communication Breaks Down-Without Anyone Trying
People with sclerosis often feel guilty. They don’t want to be a burden. So they hide how bad they feel. ‘I’m fine,’ they say. But fine isn’t true. Fine is what they say when they’re exhausted, in pain, or scared.Meanwhile, partners and kids start feeling ignored. ‘They’re not talking to me,’ one husband said. ‘I don’t know if they’re mad at me, or just too tired to care.’ That’s the trap. The illness isn’t causing conflict. It’s just removing the space where conflict used to be resolved.
Simple things become minefields. A hug might hurt. A joke might fall flat because the person missed the tone. A plan to go out for dinner gets canceled because the weather changed, and the heat made their symptoms spike. Over time, the family stops making plans. And when you stop planning, you stop dreaming together.
The Role Shifts No One Asked For
In most families, roles are clear. One person pays the bills. Another does the grocery shopping. Someone else drives the kids. When sclerosis sets in, those roles don’t just shift-they collapse.One wife in her late 40s, diagnosed with primary progressive sclerosis, used to be the main income earner. After two years, she had to reduce her hours. Her husband, who’d never balanced a checkbook, suddenly became the financial manager. He didn’t know how to read a payslip. He missed payments. They got charged late fees. He felt like a failure. She felt like a burden. Neither said anything for six months.
That’s the hidden cost. It’s not just about who does what. It’s about identity. When you can’t be the person you were, you grieve. And your family grieves with you-even if they don’t know it.
Sex, Intimacy, and the Silence Around Them
No one talks about this enough. Sclerosis affects nerves, muscles, and sensation. For many, that means reduced libido, difficulty with arousal, or pain during intimacy. Some lose bladder or bowel control. Others feel disconnected from their own bodies.Partners often don’t know how to bring it up. ‘I didn’t want to make them feel worse,’ said a man whose wife had MS for eight years. ‘So I just stopped trying. Then I realized-she missed it too.’
Intimacy doesn’t always mean sex. It can mean holding hands while watching TV. A massage after a long day. A quiet hug that lasts longer than usual. But when touch becomes painful or unpredictable, those moments disappear. And loneliness creeps in-even when you’re living under the same roof.
Children Grow Up Faster Than They Should
Kids with a parent who has sclerosis often become emotional experts before they’re teens. They learn to read facial expressions. They know when to be quiet. They avoid asking for things because ‘Dad’s already tired.’One teenager in Adelaide told me she never invited friends over because she was scared they’d see her mom struggle to walk to the door. ‘I didn’t want them to pity her,’ she said. ‘I just wanted them to see her like I do.’
These kids don’t always act out. Sometimes they just get very good at pretending everything’s okay. That’s the quiet tragedy. They’re not broken. They’re just carrying weight no child should have to hold.
Family Gatherings Change Forever
Holiday dinners used to be loud. Now they’re quiet. The table has to be closer to the bathroom. The chairs need armrests. The music has to be low because loud sounds trigger spasms. The kids don’t run around anymore-they sit quietly near their parent, watching.Extended family often doesn’t get it. ‘You’re still the same person,’ they say. But they’re not. And that’s not a failure. It’s just truth.
Some families stop hosting. Others try too hard-overcompensating with gifts, extra help, or forced cheerfulness. Neither works. What helps is showing up. Not fixing. Not praising. Just being there. Even if you don’t know what to say.
What Actually Helps
There’s no magic fix. But there are small, real things that make a difference:- Routine matters more than effort. A consistent schedule for meals, rest, and quiet time reduces stress for everyone.
- Let people help-specifically. Instead of ‘Let me know if you need anything,’ say ‘Can I pick up groceries on Thursday?’ People want to help. They just need a clear task.
- Therapy isn’t just for the person with sclerosis. Family counseling helps everyone learn how to talk without blame. It’s not about fixing the illness. It’s about fixing how you live with it.
- Find your people. Support groups for families of people with sclerosis exist. They’re not about pity. They’re about knowing you’re not alone.
- Keep celebrating small wins. A walk around the block. A joke that made everyone laugh. A meal cooked together. These aren’t minor. They’re victories.
The Long Game
Sclerosis doesn’t have a cure. But families don’t need a cure to stay whole. They need connection. They need to remember that love isn’t about how much someone can do. It’s about how much they’re still there.One couple I spoke with, married for 32 years, now sit on the porch every evening. He holds her hand. She talks about the birds. He doesn’t fix anything. He just listens. That’s their new normal. And it’s enough.
You don’t need to be strong. You just need to stay. Together.
Can sclerosis be passed down to children?
Sclerosis, like multiple sclerosis, isn’t directly inherited like a genetic disease. But having a close relative with it does slightly increase risk-usually less than 5%. It’s not guaranteed, and it’s not caused by anything you did. Most children of parents with sclerosis never develop it.
How do I talk to my partner about intimacy issues?
Start with honesty, not pressure. Say something like, ‘I miss being close to you, and I’m not sure how to bring it up.’ Use ‘I’ statements. Avoid blame. Many couples find that non-sexual touch-holding hands, back rubs, sitting close-helps rebuild connection before sex returns. A therapist who specializes in chronic illness can guide you through this.
Should kids be involved in caregiving?
Kids can help with small, age-appropriate tasks-like fetching water or turning on the TV. But they shouldn’t be responsible for medical care, emotional support, or household management. If they’re doing it, they’re probably feeling overwhelmed. Talk to them. Ask what they need. Let them be kids first.
What’s the difference between MS and other types of sclerosis?
Multiple sclerosis (MS) is the most common form, where the immune system attacks the nerve coverings. Other types, like primary progressive sclerosis, worsen slowly without flare-ups. Sclerosis can also refer to hardening of tissue in other organs, like liver or brain. But when people say ‘sclerosis’ in daily life, they usually mean MS. Always check which type you’re dealing with-treatment and outlook vary.
Are there resources for families in Australia?
Yes. MS Australia offers free family support programs, counseling, and peer networks. Local hospitals often have social workers who specialize in chronic illness. Community centers in Melbourne, Sydney, and Brisbane run caregiver support groups. You don’t have to figure this out alone.