We Live With MS, But We Wouldn’t Understand

Written on August 2, 2016

For those of us that have friends or family members with MS, we get constant reminders that we are the “normal” ones. We may live with MS every day but we don’t have it. As a result, we try to encourage, comfort and care but our best intentions often land at arm’s length because we wouldn’t understand what it’s like to be affected by MS.

With rare exception, none of us are doctors. We don’t have the training to read MRIs, evaluate blood tests or prescribe medication. We don’t have steroids and multiple treatments readily available when our significant other is in need. So we do the best we can. We may not have taken the Hippocratic Oath but we swear to do anything we can to help. We offer to run errands, help with chores and ask our loved ones to rest so they don’t burden themselves unnecessarily. We are genuinely trying to make things better.

But we don’t have the disease, so we wouldn’t understand what feeling helpless is like.

We want to spend time with those close to us but we must carefully choose the type of activity — especially those of us living in the south. Outdoor picnics, days at the beach or trips to the amusement park must be thought out since the heat exacts an extra toll on those with MS. Even the “happiest place on earth” requires attention to schedule as mom or dad may need to head back to the hotel early to cool down. Mickey Mouse has to wait on MS too.

But we don’t have the disease, so we wouldn’t understand the frustration of interruptions to family time.

Many of us gladly accept longer commutes to work if it means shorter trips to the school, grocery store or mall. The day-to-day activities of family life trump work in a heartbeat. If we could all office out of the home every day, we would do it. It is no fun leaving the house every morning unsure of how the day will start or end depending on the whims of MS. It’s a constant tug of war to fulfill professional and personal responsibilities.

But we don’t have the disease, so we wouldn’t understand what it’s like to balance priorities or make sacrifices.

We love getting out for movies, meals or mischief with those close to us. But we’ve also planned outings weeks in advance only to give the tickets away because MS flared up at the last minute. Or we’ve cancelled the rest of the night because food didn’t sit well with medicine. Or the day took an extra toll and it’s time to retire early rather than party all night. Perhaps we too quickly get accustomed to expecting the worst and don’t plan as many outings as we should. Fair enough.

But we don’t have the disease, so we wouldn’t understand what it’s like to feel discouraged.

For those with kids, we occasionally find ourselves calming everyone down and explaining why mom/dad/brother/sister/etc is crying or writhing in pain. We assure them that everything will be alright once we see the doctor. We try to maintain a face of calm to those around us even when our insides are churning because we don’t know why or when the pain to a loved one will stop.

But we don’t have the disease, so we wouldn’t understand what it’s like to be scared.

When those with MS get together, we are quietly happy that our loved ones find encouragement from one another. We may not say it but it does our hearts good to see moments of temporary relief as patients gain strength from each other and trade war stories. We often slip into the background as the healthy ones because we can’t speak to the full MS experience — we are simply observers.

But we don’t have the disease, so we wouldn’t understand what it feels like to be on the outside looking in.

At the end of every day, we look forward to spending quality time with our spouse. Physical, emotional or just conversational. We need time to both connect and decompress from another 24 hours of successfully navigating the calendar. But we don’t have the luxury of setting a table for two — MS is always the third wheel. And there are too many nights when relationship takes a back seat to recovery.

But we don’t have the disease, so we wouldn’t understand disappointment.

We won’t find any lesions on our brain scan but emotional scars abound. We don’t take an interferon to treat our symptoms because we are expected to heal with time and understanding. Our motor skills remain generally unaffected but our emotions do not. And our exhaustion is often more mental than physical. Of course, we do not carry the same burden as those with MS. But that also doesn’t mean we get by unscathed.

There isn’t a licensed neurologist that would formally diagnose us but every caregiver “has” MS. We live with its disruptions daily and our lives are anything but normal.

MS robs its patients of their smell, sight, touch, taste and hearing — all to varying degrees. As caregivers, we watch this up close as MS robs us of something just as important — our relationships with our loved ones. Monthly, weekly and daily. It takes an emotional and physical toll that we don’t receive any medicine to treat.

We care. And we would give anything to make things more normal for those afflicted with MS. Some days will be better than others — even for us.

But we don’t have the disease, so we wouldn’t understand.