Learn how to put vs.MS into action and start new conversations with Healthcare providers to help improve the way your MS is managed.
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By looking at all the ways multiple sclerosis (MS) can impact our lives – both physically and emotionally – we’ve started to expand our definition of what ‘disability’ means for people living with MS.
The next step? To learn how to put vs.MS into action – to gain the confidence to use what we’ve learned to start new conversations with healthcare providers and care partners and to improve the way MS is managed.
Here, we’ll identify some of things that might be holding you back from taking the next step, as well as sharing a few tips to help you put vs.MS into action today.
When surveyed, people living with relapsing multiple sclerosis (RMS) and RMS care partners raised several reasons why they may be hesitant to communicate more openly with their healthcare provider, family or friends.
We know it can be difficult to talk about MS disability. But it’s important to share your feelings, fears and concerns with the people who care for you. It’s the only way things can improve.
Next, we’ll take a look at some specific situations and give you tips to help you feel more comfortable having conversations with your healthcare provider.
It can be daunting when you have a lot to say, but don’t know how best to say it. To help you feel a little less overwhelmed, think about your upcoming conversation with your healthcare provider as though it were a job interview.
In that situation, you might turn to a friend to help you rehearse beforehand. So why not rehearse before going to see your healthcare provider? You can practice the key talking points so you’ll know exactly what to say when the time comes.
You can also use the vs.MS Symptom Tracker as a checklist to make sure you share all your disability concerns, whether you think they’re related to MS or not.
Practice not just simply handing over the Symptom Tracker – verbalise how you feel, otherwise your healthcare provider might not fully understand what you’re experiencing. Again, running through with a friend beforehand to make sure you can clearly explain your concerns, point by point, might be helpful.
If you’d still like a little extra support, invite your friend to the appointment – ask them to make sure you don’t leave the office without getting everything off your chest.
Nothing that is negatively impacting your life should be considered insignificant.
Remember, we’re aiming to better redefine what disability means for people living with MS. Only by sharing your own experiences will healthcare providers be able to increase their knowledge and improve how they care for you.
In short, the more they know about you, the more they can do to help.
Don’t worry. The only expert on you is you. And it is often helpful for HCPs to ask you questions, to help ensure they provide you with the best possible care.
Your healthcare providers – including neurologists and MS nurses – are experts in treating MS and navigating the clinical benefits and risks of treatment decisions.
But only you know what your personal experience is, and what matters most to you – both of which could influence your treatment options. Of course, it’s a good idea to present your thoughts and concerns in a respectful way, but asking questions will help you to build a better understanding with your healthcare provider, so you can make informed decisions together.
You make a great team.
We all get embarrassed by uncomfortable topics. But if you don’t bring them up how will they ever get addressed? Tell your healthcare provider you have trouble talking about personal matters. They’ll reassure you that they are familiar with those topics, and hopefully will prompt further discussion to take the burden off your shoulders.
And it’s important to note that your healthcare provider will not find it strange if you come prepared with a list of questions and actively make notes during your appointment as cognition loss may be a symptom that you experience with MS.
It’s natural to avoid things we do not want to do and put things off till tomorrow.
In some cases, avoiding certain things may not have long-term impacts. But MS is a degenerative disease, so if something isn’t addressed it will only worsen.
Do not wait to talk with your doctor or care team. If you are confused or have concerns, ask questions. Your healthcare providers are there to help you enjoy life to its fullest.
So be proactive, be inquisitive and speak up!
We hope this educational series has helped to give you a better understanding of how MS disability includes more than wheelchairs and walkers…And how important it is to share how you are feeling with your care team.
With shared information and increased understanding, you and your healthcare provider can work together to make the best – and most informed – decisions, helping to improve your outcomes.
It’s time to open up and record exactly how MS impacts your life. Not just the obvious stuff.