Rebecca Evans@GeriatricNursing.org, a registered nurse,and a health writer, honors March as Multiple Sclerosis Awareness Month by compositing the follow blog to share with the readers of our blog:
For individuals diagnosed with multiple sclerosis, the diagnosis can be both scary (after all, what does multiple sclerosis really mean?) and a relief (the thing that has been haunting your life finally has a name).
After that diagnosis, however, there can be a transition period, where you struggle to figure out what your treatment and management plan should look like—and where the people in your life struggle to figure out how to act around you, and how to best help you.
That transition period can be incredibly difficult, frustrating, and stressful. Hopefully this article can help you both as you make the transition.
After all, MS patients need help and support—support friends and family often want to give, but may not know how. Consider this a beginning as you start the dialogue with your friends and family.
Communication and Education
When a diagnosis is first made, you, your friends, and your family may all have a lot of reading to do. What is MS? What are the symptoms? What are the treatments? What’s the long-term prognosis?
These are all good questions, and a normal starting point. If you have friends and family unwilling to make that step, help them make it. It is important that they understand what you are going through, and how they can help, because you will need the support network around you if you are going to manage your MS very well.
As you each do more reading and learn more about the disease, that reading can help you understand—but only goes so far. After all, the experience of an actual MS patient is very different from a friend or family member. That is where communication can go a long way.
For instance, if you have MS and want your partner to understand what you are going through, there are ways you can help them understand. For instance, to help them understand how difficult mobility can be, you might consider strapping a ten-pound weight on their ankle, so they understand how heavy your leg might sometimes feel. Or have them wear a mitten and ask them to try and do delicate tasks so they can understand what it feels like to try and use numb hands.
This is an important start, but there’s still much more communication necessary. For instance, when your hand is numb, how can your partner help? This is where you will need to practice your communication skills. It may be that you need to ask them to do various tasks, and given that their hands aren’t often numb like yours are, it may take regular reminders as to how you are doing. After all, to your partner, family member, or friend, you may appear just fine—even as you may be struggling with your symptoms.
As a result, you may need to use your words. Practice saying things like “my hands are numb; could you help me with this?” From the other side, your partner, family, or friend can practice asking how you are doing and how they can help. “I noticed in something I was reading the other day that dexterity can be an issue. Are there any ways I can help when your hands are numb?”
Communication here needs to be a two-way street, and it will require regular practice.
Set The Tone
As hard as it may be, it is often up to the MS patient to set the tone. While dealing with your symptoms can be bewildering, it can often be just as—or more—confusing to friends and family members. You will need to practice asking them for help as you need it, and you will need to stay calm, no matter how frustrating it may be.
Others take their cue from us. If we are comfortable asking for their help, they can be more comfortable in giving it and asking questions about how to better help, which makes them a better support network.
When we take our frustrations out on them, though, they are less likely to help us. On their part, though, they also need to recognize that when we are cranky and irritable, that is a reflection of our fatigue and frustration with our symptoms far more often than it is frustration with them. Family and friends need to develop a thick skin as well, as MS can be hard on everyone involved.
Again, communication can help assuage hurt feelings as they arise.
Every Step Forward Is Important
For many MS patients and their support networks, getting the communication dialogue going is often the hardest part. Educating and communicating is hardest when you are each first learning how, and gets easier with practice.
So be patient as you start this process—both with yourself and with the people around you.
Knowledge and support are tremendously powerful, and if you and your loved ones practice communicating with each other, you will find you can manage your MS symptoms much more effectively.
Multiple Sclerosis – An infographic by MS