A woman presenting a large paper pad with charts representing her self and her medications to a seated doctor who listens, ready to take notes.

We With MS Must Be the Change We Want to See in the World

As recently as 5 years ago, the meme “change must begin with me” hadn’t yet captured us in the chronic community in the way it does now. There has been a not-so-subtle upshift from passivity to activism, from turning the other cheek to assertively selecting one’s medical team. Though we chronics have always populated fundraisers such as walk-a-thons and swim-a-thons, that kind of home-grown group activism is now keeping company with an evolving individual realization that waiting for others to change is like watching the pot that never boils. We are tired of waiting and eager to take action. I would like to think it is because we have “grown-up” in a way. Here is what I mean.

The importance of self-advocacy

I have noticed a sustained focus on the importance of self-advocacy in this community. More of us are talking about the role it plays in taking charge of the many facets of our own medical care. And it has not been just a lot of talk. People are reporting back on their experiences! It really works.

We have choices

Taking charge of our medical care levels the field between patient and doctor. We are no longer infantilized as patients, feeling more confident than ever to assert ourselves. Many medical professionals are already on board with patient-centered care. With some, however, it can be an uphill battle. But it is in these cases that we can find our strength. We have choices! Choice is our secret weapon.

Listen to your gut

Think of yourself as a choice ninja. Is your new neurologist second-guessing your MS diagnosis? Threatening to discontinue your well-tolerated disease-modifying drug after 15 years of stability? Are you certain they are wrong, in the marrow and in the bone of your entire being? Do you imagine making a doll in their likeness and sticking pins in it? Use their likeness as a dart board? Address them as Dr. Knucklehead in your mind? Why engage in passive aggressiveness when you could cancel them? Your best ninja weapon is not nunchucks or throwing stars. It is two little words: “You’re fired.”

Telehealth can give us better access to care

Living in a rural area with very few choices? Telehealth appointments are the silver lining of the COVID-19 pandemic. They are here to stay and can give us access to some of the best specialists. Though they do not totally replace the need for in-person appointments, we can get a lot of mileage out of them for our more routine needs. Not sure if a doctor you want to consult is on board with this? You have nothing to lose by asking them. In fact, wonderful things might happen BECAUSE you asked. You could be the first person to ask them!

What did Gandhi really say?

“Be the change you wish to see in the world” is famously attributed to Mahatma Gandhi, but this has been challenged. Here is his complete statement:

“We but mirror the world. All the tendencies present in the outer world are to be found in the world of our body. If we could change ourselves, the tendencies in the world would also change. As a man changes his own nature, so does the attitude of the world change towards him. This is the divine mystery supreme. A wonderful thing it is and the source of our happiness. We need not wait to see what others do.” – Mahatma Gandhi

Taking more control of our lives

I do not think it is so much a divine mystery supreme as a practical need to take more control of our lives. A prolonged feeling of helplessness can make us feel sicker and sadder. We have MS for a lifetime. Being the change we want to see in the world means the difference between feeling like we are doing our MS time in a maximum security prison, or living a meaningful life with MS on the outside, free to say yes to a friend’s phone call, no to a doctor’s change of medication, and laugh like the dickens at anyone who says we can’t do something.

We can. Maybe not the way THEY do it. But we can find a way.

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