Open Letter for the Newly Diagnosed
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Profile photo of Laura Kolaczkowski

Dear newly diagnosed,

First I want to welcome you to the club that no one wants to join – the world of MS.  I’m sure you are overwhelmed with this news unless you happen to already know others who live with multiple sclerosis.  I am one such person and it is my pleasure to meet you, even though it could be under better conditions.

I was recently asked if I had any advice for people who are newly diagnosed. My good friend Stephanie, who happens to also be an MS certified nurse and is also herself a person with MS, wrote five tips for the newly diagnosed  and I hope they resonate with you.

A wealth of information

There is so much information out there about MS and I know you are anxious to know EVERYTHING you can – let me tell you that is a daunting task, so I urge you to just take small bites of information, process it, and then move on to the next bit.  Life with MS is a marathon and not a sprint race and you have plenty of time to learn. Be sure to get your information from reliable places such as the advocacy groups – Multiple Sclerosis Association of America, NMSS and the MS Foundation are all great resources.

Finding trusted sites

There are a few other sites I really like and trust  – I write for MultipleSclerosis.net and this is a great group of people who just happen to also have MS. The MultipleSclerosis.net Facebook page notifies people of each day’s new articles, and you might want to follow/like that page as well if you want to read about other’s experiences. It is helpful to know you are not alone and there is comfort in reading the experiences of others.

Don’t be surprised if it takes you a long while to even adjust to this idea of living with a chronic disease.  I find for most people it takes about a year to slip into having MS as a constant companion.  There is just too much to consider intellectually and emotionally to grasp it all at once, so don’t try.  It’s too much to absorb immediately.

Everyone’s experience is different

Be forewarned that well-meaning people are bound to say some thoughtless things to you as your diagnosis becomes public knowledge.  Words like ‘you know the woman at the beauty shop had a cousin who had MS and she (fill in some horrendous ending here)‘ will be common statements and almost always have bad endings or an unproven treatment like bee sting therapy or worse, to try. They mean well (usually) and you will develop your own coping mechanisms to respond – my point in bringing this up is MS is complex and each of us are very different and what I experience with MS will NEVER be what others have. So don’t compare yourself – it will just drive you crazy. And definitely don’t ever let others draw comparisons for you.

Remember we are not Annette Funicello, Richard Pryor or Jerry’s Kids (a common mistake people make but those are MD and not MS) – the days of certain disability with MS is in the past. If you don’t already have one, work on developing a sense of humor, even if it is dark humor.  Laughter helps to get through the day and makes uncertainty a bit more bearable.

It’s good to be hopeful

I want you to know that as crazy as it sounds, there has NEVER been a better time to be diagnosed with MS than now. Just a few years ago, there was no approved FDA treatment and today we have 12, and more are due soon.  Just like no two people with MS are alike, we don’t respond the same to these treatments, so if whatever your doctor has suggested doesn’t work for you, there are other options. I hope you have decided to try a disease modifying therapy (DMT) because it can make all the difference in your disease progression.
It is so critical that you be treated by a neurologist who specializes in MS and not just general neurology. Regular neuros have to understand the whole spectrum of neurological disorders such as Parkinsons, stroke, epilepsy, migraines and more, and MS deserves full time attention and that is why most of us believe a specialist is essential.

I’m sorry you have multiple sclerosis, but it’s not a death sentence and it is a disease most people learn to live with. I hope some of this rambling is of use to you, and please read the article from Stephanie.  She is much more concise than me and her five points are a great guide for this journey with MS.

Wishing you well,

Laura

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3 comments on “Open Letter for the Newly Diagnosed

  1. Profile photo of corgi9 corgi9 says:

    Being diagnosed 38 years ago…and still ambulatory….one piece of advice…that I wish I started earlier in my life with MS…that is if you are capable…work on strengthening your legs by doing even simple leg raises…and Laura is definitely right…we all have the same disease BUT we are all different…like snowflakes….and when “well meaning” people blabber some foolish things….just chuckle under your breadth and move on….even after 38 years with MS you are never too old (I’m 70) to learn new coping skills….and don’t forget that prayers also have their place here.

  2. Profile photo of 1afrx2y 1afrx2y says:

    Correction – Annette Funnicello and Richard Pryor DO have Multiple Sclerosis, NOT MD. It’s Jerry’s Kids that have MD, not MS.

  3. Profile photo of Laura Kolaczkowski Laura Kolaczkowski author says:

    Sorry I was less than clear – we are NOTJerry’s MD kids but Annette Funicello and Richard Pryor were definitely among us with having MS. I think my punctuation or phrasing needs to be change.

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