Dear Newly Diagnosed

By Lisa Scroggins

This should have been easy for me to write. My topic is coping with getting a diagnosis of MS (multiple sclerosis). Mine occurred quite a while ago, and that is why I believe it’s been somewhat difficult to write about. Not from lack of memory, nor lack of interest. So much has changed since I received a diagnosis, that at first, I thought, there are treatments now – not so when I was diagnosed. There is so much information available on the internet now, yet when I was desperate for information, that now well-traveled virtual highway was known only to a handful of adventurous folks; that is, not to you and me. I was limited to what I could find at my local library, which was paltry, at best.

Then it came to me: the same technology that has made instant communication possible, that has transformed the world, truly, is not all lollipops and gumdrops. If I were speaking to someone newly diagnosed, I think one of the first things I would say is that he/she should tread lightly in cyberspace.

Over the past few years, I have participated in a few Facebook groups organized by people with MS. I didn’t participate in some of them for long, however. It’s pretty astonishing how many people seem to use Facebook as their “go to,” for lots of things. Apparently, a fair number of MS patients fall into this group. If the information found were always correct and/or helpful, this might not be so bad. But as some of you reading this have learned, some of the information found via social media and the internet is undoubtedly anything but accurate or helpful. It’s true, just as in the bad old days, that misinformation and the “awfulizing” of MS still live large.

More important than being wary of social media or things that friends and acquaintances might say to you about this recalcitrant disease, do not take as medical gospel much of what you read on the internet. Not only do you have to consider the source, you also have to realize that MS is just as unique as is your very own fingerprint. No two people have the exact same symptoms, nor do they have the same disease course. In my experience, well-known websites staffed by bona fide medical people generally give a, well, general description of MS. There are still so many unknowns about MS that despite as many as 13 FDA-approved therapies for MS, scientists still seem to struggle with which people should get this drug, and who should get that drug. Efforts are underway to figure out how to personalize the drugs (and not only for MS), but that strategy is in its infancy.

Sadly, there are still some neurologists out there who either have a hopeless attitude about MS, or their bedside manner is atrocious. Both can be devastating for you, dear newly diagnosed person. I started to write “dear newly diagnosed YOUNG person,” but since in the past 10 years or so, I’ve known quite a few people who were diagnosed in their 40s or 50s, and even one man who was past 60 years of age when diagnosed, to assume that all newbies to the helter-skelter world of MS are young would be a grave mistake. I am nothing more than a layperson with no special medical training, and yet, my strongest advice to those just setting out on this journey would be that you must be your own advocate. I know! That’s not what you feel like hearing, and you may even resent me for saying it. But trust me, nobody cares more about what happens to you and your body than you do.

As you seek information about MS, you will come upon some that is heart-breaking. You will probably see and hear about people who have had a miserable course. I remember when I tried to avoid those people. It wasn’t because I thought it was contagious, but it was because I didn’t want to hear them as they railed against the unfairness that is at the heart of MS. I must hasten to add that even though I said I avoided “those people,” that isn’t an accurate assessment of what happened. I knew one woman in the first year after I was diagnosed, who was the leader of an MS support group for the newly diagnosed, and she used a scooter. She was such a kind person, a real leader in all the meaning of that word, that I don’t believe any of us looked at her in the scooter and ran for the hills. She offered resources when she could, but she listened, she sympathized, she even shared a couple of times when she cried. But she ultimately was there for us, and we knew it. Nobody else could have understood so well what the deepest fears of every one of us were. Other groups in which I’ve participated consisted mostly of a lot of complaining about the difficulties of having MS, and those, my friends, are legion. You may already have experienced some of those. If so, then right now, please do whatever you have to, to keep your sanity. I remember soon after getting the diagnosis, my family and I were on a cross-country trip, and we were about to enter a long tunnel. I had a sudden thought and was terrified that when we came out of the tunnel, I might be blind. That didn’t happen. As far as I know, nobody has something that happens THAT rapidly. Take a deep breath. You don’t have to get everything figured out today, or tomorrow, or next week.

One more point about finding information about MS on the internet. Along with great strides in therapies for MS, there have been many that fall in the realm of CAM, or complementary, alternative and integrative health measures you may try. In this area you may find some relief. You also may find some very strident people who insist that you must never eat X, or always eat Y, or maybe if you do THIS, but stop doing THAT, you will be cured. Read, research, try to vet the proponent of the ideas you consider. Talk to your doctor about it. There are those who stand to profit from banking on your fears. The truth is, that at this very point in your life when you likely are feeling the most vulnerable ever, you will be called to muster up your best intelligence-gathering efforts, and your ability to discern what makes sense and seems likely to benefit you. You can rise to this challenge. And you will probably be called to do so again and again. A better way of describing what you need to do is to be ever vigilant, ever on the quest, but always remain hopeful.

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As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

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