I’m frequently asked by the friends and loved ones of someone with Myasthenia Gravis what they can do to best help. My response is twofold.
First, I tell them to treat their loved one with patience and understanding. Living with MG is not an easy task. Symptoms can weigh heavily on an MG patient, and since it’s a progressive disease, the future remains uncertain. That, in itself, is scary. MG can make us grumpy and short. We have good days and we have bad days. We have times when we’re ready to take on the world and we have times when we can hardly get out of bed. For that reason, remaining patient with us and attempting to understand the difficulties we face is a big ask, but very important. There are times when we need a helping hand, we need encouragement, we need a shoulder to cry on.
My second response must follow right behind the first, and that is to show us tough love. While we need your compassion, we also need your strength. Sometimes that means saying what needs to be said even if it may appear that it could hurt our feelings. Sometimes we need someone to snap us out of the funk in which we’ve found ourselves. Sometimes we need to hear the truth.
Let me give you an example of each and how they apply.
We wake up to a bad day. We’re feeling exceptionally tired. Brushing our teeth seems to require heroic strength. All we want to do is go back to bed. In this scenario, your love, patience, understanding, and encouragement is what we most need. Your compassion and encouragement can help us out of the dark cloud in which we find ourselves engulfed. Words like, “come on, let’s get out of bed and get you some breakfast” can go a long way.
If we’re choosing to remain in that cloud, however, that’s when your sense of tough love must kick in. We really need you to be the sensible person, the logical person, the strong person. We need you to kick it in gear and let us know in no uncertain terms that wallowing in self-pity will not be tolerated. Words like, “you’re stronger than this, so we’re going to get you out of bed” are what is needed. You need to show us that it’s your love that is providing the strength we need and it’s your encouragement that will lead to brighter things.
Jesus once taught his disciples the lesson about turning the other cheek. There may come a time when the words we utter to you are harsh or even demeaning. Anyone going through pain can turn bitter. Turn your other cheek to us once, but make sure it stops right there. Call us out by saying something like “I’ll tolerate that sort of behavior once, but I won’t allow you to treat me like that again.” If we aren’t treating you with respect, then stop us in our tracks and make it perfectly clear that you aren’t here to put up with our abuse and that it will not be tolerated.
It’s during these times that we need your tough love the most. You see, sometimes we don’t see clearly. Sometimes the outlook doesn’t look so rosy. Sometimes we can get in a funk. Sometimes life can look pretty grim. But in each of those scenarios, we never have a right to take it out on you. If you love us, don’t tolerate our antics. Even if it means threatening to walk away, or actually having to do it. Walk away. Wake us up. Make us realize you’re there out of love, but it’s our decision if we choose not to accept it. Let us know you’re more than willing to share your love, but only if that love is returned.
There are medical conditions that can cause a person to become mentally or physically abusive. Let me set the record straight. Myasthenia Gravis is NOT one of those conditions. If we’re treating you improperly, it’s not because of MG, it’s because we’re choosing to behave in that fashion and that is never acceptable.
So those are my two pieces of advice. If you read my blogs, you know that I try to stay as positive as possible, but even I get tripped up from time to time. It happens, but the negativity should only last momentarily. If the negativity continues, we need your compassion and encouragement to help us out, or your tough love to set us straight.
Thanks for all you do for us. We really do appreciate it. It’s my hope through these blogs to make everyone’s journey with Myasthenia Gravis a little easier…easier for the patient and for all those around them.