Communicating about MS

Communicating about MS
Inspiring stories Article

“Sense" is characterised by good judgement, wisdom, or prudence. And "sensibility" is characterised by sensitivity, sympathy, and emotionality. When I was confronted with my MS diagnosis, I was faced by something unknown, something unpredictable. 

I thought it would impact my future, that it would compromise everything in my life. But you learn to manage your symptoms and adjust to MS in order to realise your goals.
 

What were your anxieties and concerns when you were first diagnosed with MS? 

By the time diagnosis arrived, I had many questions. The first one was “Why me?”, and then “What is MS?”. Luckily, I had the opportunity to talk with my neurologist, who fully informed me about my condition.

I was 39 years old at that time, I had already been blessed with a happy marriage and a strong and healthy young child who gave me lots of hope going forward.
 

How was speaking to your family about your MS diagnosis? 

Telling my family about my diagnosis was a challenge. My father was hospitalized due to lung cancer. Things weren’t too stable. I was afraid that I would no longer be able to continue to be the pillar of strength for my family. I decided it was time to sit down and have an honest chat with my wife Paula. Her understanding and positivity were a real boost. It gave me the confidence to open up to the rest of the family about my MS. 

Everyone has something they have to go through. A unique journey to experience. In my case it’s MS. Although MS is a chronic disease, with the support of my family, and a positive attitude, I know that I can overcome the struggles MS may present me with. 
10 years on after being open with my family, I am thriving despite MS. I’m not just seen as an MS patient to those closest to me. And I’ve realised that I could spend more of my time studying and researching my MS and still go after my goals. I have got used to having MS and this new reality now, which proves anyone else can too.  
 

Describe how to find trusted information – especially about symptoms and MS management.

Since the beginning I tried to know more about MS. But I’ve learned to avoid seeking Dr. Google´s information and tried to focus on my neurologist’s advice and visit patient support resources like MS One to One.
 

What is your advice to ensure personal goals and priorities are not sacrificed?

My thinking is based on the following steps. We start with an understanding of the problem; we then define our priorities in order to overcome our main issues; we start to think outside of the box on how to overcome these issues; and finally, we test to see if the solutions are feasible.  

Sometimes it’s difficult due to my MS condition. Fatigue, bladder issues and cognitive slowness can be problematic, but I’m now realising that I can overcome these things.

I overcome my fatigue by planning in advance. Making sure I get a full night’s sleep every night is important. My bladder issues have finally settled. And personally, I’ve found that decreasing the amount of caffeinated drinks I consume along with junk food has helped a lot.

I have also found that the best way to combat cognitive slowness is to exercise your cognitive capacities. I have started to write blogs, read newspapers, and complete crossword challenges. I also note down every task I have for the day and I use my smartphone to remind me of my daily appointments.  
 

Can you speak about the importance of the MS community in connecting with others with the disease?

One of my priorities was to surround myself with others with MS. And most importantly, to be around family and friends, and those who care for me. 

I’m a friendly person to those around me, so it’s been natural reaching out to others who want to connect. I’ve kept doing everything I’ve always done, but now I do some things in a different way, which has allowed people around me to start seeing me as Joao, instead of ‘an MS patient’.

If talking to your family, or speaking with friends about your MS is difficult, reaching out to others within the online MS community is a great alternative. Especially at a time like this.
 

How did your friends, family and colleagues react to your diagnosis?

It can be difficult. It was for me.

But by being open about my story, I found this was a good way to convey my MS experience and my needs. With this being said, everyone’s story is different. Every MS experience is unique, so everyone with MS has to find their own approach based on what feels right for them.

How did you find helping others with the disease better understand their MS related problems?

This past year has brought with it some new challenges helping others to face MS diagnosis. I didn’t realise that my MS position could inspire others or that I was a good example to those that were facing MS for the first time. But it has made me feel like I have a positive new purpose, for the community, as well as caring for my family. 

When my mobile rang last November, for example, I was petrified. It was “M”, someone I met 35 years ago. It turned out her older son, “C”, was experiencing some symptoms related to MS. I always knew “C” was a healthy young man, and a promising student, but he was dealing with symptoms that were very similar to those experienced by people with MS. I’m not an HCP but thought I could help. 

I couldn’t miss the chance to have a chat with the boy and his parents. I wanted to help, as it’s hard to see people you care about worrying. 

In these situations, using your own sense as well as being sensitive are important when facing a new chapter in your life, as well as helping others face new chapters in their own lives.

Living with MS, you can make the decision to be the patient, or the boss! You must be sure that you don't compromise, it’s all about the way you face the facts.

I communicated this to “C”, reassuring him that life could change, and making it clear that if he was diagnosed with MS, he must remain hopeful to overcome whatever appears to stand in the way. This is important to remember, so you can climb the mountain without fear.
 

What’s your advice on how to manage medical appointments and communicate with HCPs?

If your doctor takes your problems seriously, if they listen to you with empathy, feel like your ally, involve you in decision-making (sharing the pros and cons of treatments in a straightforward way), then you're naturally more likely to trust them. Judging their clinical competence is harder, but you may be able to go on past experience. Anything that puts you and your HCP on the same level, increases the trust between the two of you.

The next steps are beyond your neurologist, and more related to your commitment to overcome this new reality. Staying focused on your priorities and adapting your goals, the choice is yours to make. 
 

How did you connect with others with MS during the pandemic?

Connecting with PwMS is a challenge at the best of times. During this new pandemic it may appear even more difficult. But given the technology of today, it is easy to arrange calls, and chat with others by utilising the many different channels created by MS patient association events and MS support groups on social media, such as https://www.msworld.org/ and https://www.mymsteam.com/.

For those with MS, it’s the combination of sense and sensibility that enables you to continue to grow. What pushes you on even further is allowing these senses and sensibilities to reach another person with MS. 

With the right support, and the right mindset, just remember, you’re going to be all right. 
 

 

João Medeiros, 2021

MAT-EU-2100101

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