The Difficulty and Honor of Hearing From Those Newly Diagnosed With MS


08 Jan
08Jan


I try to offer resources and reassurance, but there are some answers I just don’t have.

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When a person is newly diagnosed with MS, they and their family need to know that things will be all right.Tay Jnr/Getty Images


I received far, far too many messages in 2018 from my family, friends, friends of friends, and even people I’ve never met. The senders are always concerned, often bewildered, and sometimes quite worried. They ask for guidance; they seek advice; they long for credible resources.

What they hope for more than anything is honesty … but they also hope for answers I cannot provide.

These, of course, are people who get in touch because someone they know has recently been diagnosed with multiple sclerosis (MS).

I am honored that people reach out to me when looking for answers. It means — to me at least — that I am somehow meeting my goals of making the experiences and the information I share relatable and understandable to the broader MS audience.

But I’m saddened at the number of newly diagnosed members who continue to be added to our club's roster.

RELATED: New CDC Registry to Monitor MS Prevalence and Disease Trends

So Many People Are Unaware of the Resources Available to Them

I am overwhelmed by the number of people who want to help in any way they can but who are unaware of the resources available to them as people who care about someone with MS.

These organizations, like so many others, aren’t just for people living with MS. They can help those who want to help those with the disease, too. Here’s but a partial list:

RELATED: MS Resources

An MS Diagnosis Affects You and Those Around You

When I’m approached about a particular MS symptom or coping strategy, I’m almost always able to offer up an article or two on the subject. This year, I will enter my 14th year of writing about living with multiple sclerosis. In that time, I've amassed quite a library of MS-related topics (just google “Trevis Gleason” and your MS topic of interest).

But people are looking for more than a simple blog post or article.

As many people with MS know, those first months after diagnosis are harrowing. What we may not know is that there are people who surround us — family, friends, coworkers, neighbors, teachers — who are having a difficult time with it in their own way. They need to know and understand some of the same things that the person with MS does.

Namely that things will be all right. They won’t be the same; they’ll be different even if they don’t feel different.

RELATED: The Wide-Ranging Impact of Multiple Sclerosis on My Social Circle

How to Help When Each Person’s MS Experience Is Different

Also, it’s important to know, particularly for those of us who get those calls and emails, that everyone’s journey with MS is different — just as each person is different. How I have found my way might not be the path for everyone. How one person with MS has done, taken, or experienced any one thing to make their life with multiple sclerosis a little bit better isn’t all that relevant.

What’s better, I think, is for the lot of us to drop bread crumbs along our journey and leave a general direction that others may choose to follow. No one person’s path can be trod by another. The more crumbs on any particular topic, however, and a person new to our community can see generalities that have worked for many.

RELATED: 10 Tips for People Newly Diagnosed With Multiple Sclerosis

I will continue to get those messages in 2019. Many readers of this column will as well. It’s important that we each offer what support we can at that moment. What is equally important is to steer those with MS or those who are concerned for someone with MS to communities who have helped us find our way as well.

None of us got here alone, and no one should have to go it alone — in giving advice as well as living with a new diagnosis.

Wishing you and your family the best of health.

Cheers,

Trevis

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