How to talk about MS after you’ve been diagnosed

Diane’s story

Diane sits quietly in the neurologist’s office collecting her thoughts. She’s just received a diagnosis of multiple sclerosis. It didn’t come as a surprise; she recognized many of the warning signs and has known for a few years that something was off. Fatigue and heat sensitivity tipped her off, seeing double is what brought her to her doctor to seek answers.

Diane is conflicted by the relief she feels at her MS diagnosis.  As she leaves the hospital, her relief turns to fear: “What do I do now?”

She runs through her next steps: learn more about this disease and decide whom to tell about her diagnosis. This was not going to be easy.

Diane’s experience is not unique. Nobody wants to feel alone at the time of their diagnosis. As well intentioned as people are, sometimes you just need someone who understands what you’re going through.

Perhaps you feel a certain urgency to share the news with colleagues whom you see on a daily basis. Maybe you want to confide in an old friend. Or take it slow and keep your diagnosis private. You may want to look for online resources.

Our goal is to equip you with the knowledge and language you need to talk about MS. Below we’ve listed some tips collected from conversations with people affected by MS.

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Decide whom you want to tell

Do you tell just one or two people? Or do you just get it out in the open? This is a deeply personal question.

Talking about your MS is a personal choice. We are here to help. We’ve tackled a number of similar topics on our blog. If you’re dating, for example, we have a post that may help you talk about your diagnosis with your partner. If you have young children, their age may play a big factor in your decision to share the news. At work, sharing the news may mean asking for accommodations that allow you to remain a member of the team. Here are some other resources that you might find helpful:

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Gather as much information as you can

One of the most commonly cited experts on MS is Dr. Paul O’Connor, who wrote Multiple Sclerosis: The facts you need.  It’s a quick read at 150 pages, and is broken down into easy-to-digest sections, ranging from what causes the disease to the social aspects of MS.

The internet is a vast network. It’s important to be able to trust your sources. When it comes to researching information about MS, many accredited sources are available, ranging from the Progressive MS Alliance, the MS International Foundation, the National MS Society of the USA, and our own MS information section.

We also have a large library of video content on our YouTube channel, ranging from education to lived experiences with the disease and information for people who are newly diagnosed. The best way to gauge the credibility of the information you are coming across is to ask questions, check references and cross reference the information. If something is cited in a few different sources or, when it comes to research, is backed up by clinical trials, these are important factors in determining the validity of the material.

These resources are a great starting point for learning about MS and may spark a few questions for your healthcare team as you start to open up about your own experiences with MS.

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Be your own advocate

From hospital beds to pharmacy counters and everywhere in between, don’t be afraid to get loud, be persistent, and push for the care you deserve. Try to surround yourself with people who will listen to you and make you feel heard, and to whom you feel comfortable speaking your mind.

MS doesn’t define you. Some people choose to talk about it to raise awareness, which can help others who are struggling.

There is no one-size-fits all solution. We’ve developed a healthcare team worksheet to help highlight important parts the discussion with your doctors and nurses rather than waiting for them to initiate the conversation. This will help them to give you the care and options you are looking for.

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Find a support network 

Social media, the MS Society, and community resources are excellent places to find support around you, and connect with others who may share your experience with MS and/or other chronic illnesses.

  • MS peer-to-peer support: Sometimes the best person to talk to is someone who also has MS. Volunteers from across Canada are provided with extensive training to ensure they have the skills to best support you.
  • #ChatMS: A weekly Twitter chat focused on various themes related to MS.
  • Support groups: Offered in many communities across Canada if you prefer connecting face to face.
  • Snapchat: The MS Society has regular updates – including an inside look at our Canadian MS research, which can give you some food for thought.
  • Facebook: Our community is more than 30,000 strong, and you can comment on research updates, share your own stories or read the stories of others from coast to coast

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Trust yourself

You’re the expert on your own experience. We are here to offer support and connect you with people who can help.

Resources

If you’re looking for additional information and support, MS Navigators are available Canada-wide, Monday to Friday, 9 am to 5 pm local time.  Navigators will assist you with getting information and support tailored to what you need, including connecting you with your local MS Society representatives. You can reach an MS Navigator by phone at 1 844 859 6789 or by email at msnavigators@mssociety.ca.

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