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3 Things I Would Say To The Newly Diagnosed

This post is inspired by Shift MS’ Youtube channel MS Reporters.

MS reporters is a video library chock full of amazing content made by MSers for MSers, and I’m just loving this resource!

They have a comprehensive video collection for people who are newly diagnosed where experts share three things every newly diagnosed MSer should know, and it got me thinking, what would be the 3 things I would say to someone newly diagnosed with MS?

There were just so many things that came to mind, but when it came to narrowing it down to just 3 things I immediately focused on one of the hardest things I had to deal with: The emotions of being newly diagnosed.

3 things I would say to the newly diagnosed

3 Things I Would Say To The Newly Diagnosed

If you’ve been newly diagnosed, you are probably experiencing a whirlwind of emotions and are being bombarded with lots of new information.
With all the things going through your mind at the moment what would be the most important things to know?

1. Take care of your mental health

MS may be a physical illness but don’t forget your mental health. Especially when you have just been diagnosed. This can be an especially stressful period so be prepared for an emotional roller coaster. When I was first diagnosed, there were specific things I thought would be difficult, such as dealing with the physical changes that are usually associated with MS, loss of mobility, that sort of thing.

Time to grieve

Alexas_Fotos / Pixabay

What I found most challenging in the beginning, however, was dealing with my emotions.

Let me explain.

Pre MS I would say that emotionally speaking, I was pretty solid. Not much would rattle me, I was like Spock. Logic was what ruled my existence. After MS my emotions began to rule and this was entirely foreign to me.

MS does impact you psychologically so be prepared. If you have never needed emotional support before, don’t be stubborn like I was in the beginning. Talk about the feelings you have and work through them as soon as you can. You will go through a grieving process just as if you have lost a loved one and there is nothing wrong with seeking help at this difficult time.

And above all. Give yourself time to grieve.

You can access counselling and psychological support services through your primary health care provider or local MS support service.

2. Build a support network

There are two types of supports, formal and informal

Formal

Find support

Alexas_Fotos / Pixabay

Find a good primary health care provider if you don’t already have one. A primary health care provider manages your day-to-day health needs, organises referrals to specialists and coordinates appropriate supports.

A Primary Health Care Provider is typically your first point of contact and who you see for day-to-day health concerns. This can either be a general practitioner (doctor), nurse practitioner or allied health professional.

Getting linked in with your local MS support group and organisation is also important. They will have more specific knowledge about MS as well as access to the latest research and treatment options. They do fantastic work and I don’t know where I would be without them.

Informal

These are your non-professional forms of support like family and friends.

Talk to family and friends about how they can support you. If you feel you don’t need support just yet, then ask if you can count on them for support in the future. And don’t be afraid to say you need help.

Where to find support:

Local MS Society
MS Support groups
Online forums 

3. Start building an MS toolbox.

Learn where to find reliable fact-based sources of information and learn how to detect poorly researched anecdotal advice.

My rule of thumb is: if I found it on the internet it’s going to need fact-checking. And I never ever pin all my hopes on that latest piece of research.

I get my medical information from my formal supports such as MS Australia and my health care providers, and when I’m not sure about something, I always get a second opinion.

When it comes to the day-to-day challenges of living with MS, I ask my MS nurse and other MSers (that’s where the nurses get a lot of info from in the first place), as well as fellow spoonies. I mean who better to ask about managing life with MS than those who live with it every day!

And don’t forget to include your family and friends in the learning and fact-finding process.

Family and friends will have their own questions about MS and how to best support you. Including my family in my ‘MS education’ helped eliminate their feelings of helplessness and uncertainty about the future. They have now become my greatest allies in my MS journey.

You can find a ‘rough guide‘ to explaining MS to family and friend over at Shift MS.

never stop learning

geralt / Pixabay

Final Thoughts

When you are newly diagnosed, you are thrust into a world of uncertainty. There are things you just can not predict, such as how your MS will progress, and exactly how it will impact your life, but there are a few certainties, and these are:

You will need time to grieve, process and come to terms with your diagnosis.

You will need allies and supports

and you will need knowledge about this new part of your life.

Looking back at my own experiences there are certain things that I should have addressed sooner rather than later. Those things would be accessing emotional supports for myself sooner, establishing a support network and educating myself and my supports.

If you address these things right from the start, you will have the most valuable tools to help you cope with whatever MS decides to throw at you.

Coming Up Next Week

Next week I’ll be talking about cognitive problems and some of the ways I manage this.

So…

Subscribe or follow me if you’d like updates when future posts become available.

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