For MS Awareness Month, we’re turning the focus of this issue to the people around us. MS doesn’t just impact the life of the person living with the disease, after all. Like any chronic illness, MS affects our family, friends, and coworkers as well.
They could be our parents, spouses, siblings, or children. They might be friends we’ve known for decades or new people we’ve just met; long-time work associates, a trusted boss, or a brand new colleague.
There are many terms for the people who are on this MS journey with us — caregivers, support partners, companions, and countless more. Each term speaks to the personal relationship and role they play, and every relationship is of course very different. Throughout this issue, we’ll use the term “support partner,” but recognize this might not fit every situation.
Developing a relationship with a medical team that you trust and can talk to is always important, but here we’ll concentrate on three other categories of support: our primary support partners, our friends and extended families, and our colleagues in the workplace. We’ll also offer some practical advice for these support partners, regardless of which category they fall into for you.
Similarly, we’ve included four looks into the lives of real people who have been touched by MS, in the form of two brief Support Stories and two InforMS Interviews, each showing a different personal perspective of MS, either through the eyes of someone living with MS, or as a support partner to a loved one.
We hope these stories will give you a glimpse into several very different situations and relationships, but we understand it’s impossible to reflect everyone’s individual experience here. We hope you’ll find useful information and be able to take away some things that are relevant for you.
Support Partners At Home
For most people living with MS, primary support partners are the people they live with and interact with the most — spouses, immediate family, or very close friends.
In many cases, these support partners will be existing relationships — people who were close before MS came into the picture.
Soon after an initial MS diagnosis, these relationships begin to change. In the beginning, this may mean emotional support and helping adjust to the realities of living with a chronic illness. Eventually, these partners may grow into important sources of help and assistance for their loved one living with MS.
An MS diagnosis confronts us with worries and questions that we’d never considered before. Loved ones may want to help all they can, but also may be dealing with a whole different set of worries and questions focused not only on their loved one’s health, but on their own new or changing role.
The first way to begin looking for answers is to get educated about MS. Often an initial diagnosis comes in an office visit that ends up being a whirlwind of information, much of which can’t be retained effectively under those circumstances.
Thankfully, there is no shortage of resources for learning about MS. One of the best ways to support someone newly diagnosed with MS is to learn about it together. Taking a class or watching a webinar together can get everyone on the same page with their understanding of the disease, symptoms, treatments, and short- and long-term outlooks.
The Rocky Mountain MS Center’s online MS 101 program provides a small-group setting that’s perfect for people living with MS,their immediate family and close friends to learn together. This class is designed to provide more detailed information than can usually be delivered during an office visit with your doctor, and is geared toward not only newly diagnosed patients, but anyone looking to learn more about MS at any point in their journey. For more information on this free program, visit MSCenter.org/MS101.
We know that MS is different for every person, and that MS symptoms vary greatly from one individual to the next — so there’s no single set of circumstances for you or your partner to expect.
But maybe even more important to understand is that MS symptoms can vary greatly within one individual, too. How you feel today, or what specific symptoms you’re dealing with right now may be different from what’s going on with you tomorrow.
It can help to allow your partner to get to know the signs of your symptoms, and make sure they know what you’re dealing with on any given day. Let them know when you truly need their help, and when it’s best for them to let you take care of yourself.
This may mean adjusting the ways you do common tasks, or learning to do certain things a little differently. This can also come in the form of setting boundaries for yourself, too. If performing certain tasks that are simple enough to do on your own eventually leads to a worsening of other symptoms, like soreness or fatigue, think about when you need to stop over-exerting yourself and ask for the help your partner can provide.
In the end, it’s about being thoughtful and realistic about the support that you ask for and expect, which will help both you and your partner maintain as much balance as you can.
Many support partners — particularly spouses or romantic partners — can also benefit from finding ways to separate the MS-focused relationship from the non-MS relationship. This can be as simple as making time for things you enjoyed together “before” MS. While MS may be a part of both your lives now, remember that it’s not what your relationship was built upon in the first place.
Extended Networks: Friends and Family Outside Your Home
Initial diagnosis of MS can be a traumatic experience. MS symptoms can make our routines more difficult. Uncertainty about our future can impact our mental and emotional health. All of these things can lead to feeling isolated and alone.
Yet, we know that staying engaged and social is an important part of everyone’s life. In fact, the famous Harvard Study of Adult Development, launched in 1938 and still collecting data, reports that our relationships are the number one predictor of life satisfaction.
You don’t have to tell everyone you know that you have MS, and deciding who knows, how you tell them, and how much you share can be a complicated decision. In 2016, InforMS Magazine explored this topic more deeply, stating: “The literature on disclosing MS to others makes a distinction between concealing, informing, disclosing, and partially disclosing a medical condition. To inform means simply to state that you have MS. Disclosure means that you are also providing information about how MS affects you. Partial disclosure involves providing selective information about how MS affects you. When you conceal MS, you are making conscious efforts to hide symptoms.” (For more on this topic, please see “Can We Talk? The Pros and Cons of Disclosing MS,” from the Summer 2016 issue of InforMS, available at MSCenter.org.)
There is no right or wrong answer when it comes to telling people you know about your MS. But if people don’t know what you’re living with, they’re in the dark about your needs and may not be able to support you in the ways that are best for you.
In many cases, friends want to help! You may find people outside your closest circle will be more than happy and willing to become resources for various kinds of assistance, once they better understand what they can do for you.
For those in your life who may not be your routine or daily support partners, the first step toward helping them help you is once again a solid education: what MS is, what MS isn’t, and how they can best be helpful, tactful and respectful of your needs.
As previously mentioned, the Rocky Mountain MS Center’s MS 101 program is a great first step in learning about MS. Attendees are welcome to invite friends to a session with them or on their own.
Another helpful primer on the basics of MS that may be suitable for your extended network is part of the MS Center’s annual MS Awareness Month campaign, which is promoted and updated every March, but available year-round. Share our Awareness Month content at MSCenter.org/awareness and look for our “Answering MS Questions” page, which provides a brief and easily-digestible synopsis of MS, including a list of some of the most commonly reported MS symptoms. This primer is available directly at MSCenter.org/msquestions, and can be easily printed, emailed, or shared on social media.
Education and understanding can go a long way, and so can communication. If you’re going to let people know about your MS, make sure they know there are resources available for them to learn more. It’s also helpful to allow them to ask questions — while those learning resources are widely available, they also need to know what your experience is, how MS impacts your daily life, and what they can do for you.
Accommodations and Relationships at Work
We’ve talked about how MS impacts different people in vastly different ways, and those personal experiences with MS will also dictate whether or not someone living with MS will continue in the workforce. For many people, their work lives won’t be impacted much by their MS at all; for others, either the severity of their MS symptoms or the nature of their work itself may mean significant changes to their career path.
We talked earlier about disclosing MS to people you know, and work is also a place where deciding to inform people about your MS can be complicated.
In a previous issue of InforMS magazine, attorney and physician assistant Tom Stewart wrote: “Most people know very little about MS. Employers and co-workers may even think that it is a terminal condition. Many don’t know that with good treatment, functional loss over time may be minimal or even zero. Uninformed people in your work environment, due to prejudice, may begin to view you as less competent. You may even miss promotions — or worse — based on this prejudice. Though this may be illegal, you may find it hard to prove. In any case, what you want are strong, supportive relationships with co-workers and supervisors, not a potential legal claim.”
Nonetheless, there are many good reasons to let your employer and your coworkers know. According to “Should I Tell?” from the National MS Society, possible reasons to disclose include:
- Keeping a secret can be stressful and create anxiety.
- Once you disclose, you may feel a sense of relief — and find support from people in the workplace.
- Disclosing medical information sooner rather than later may provide an opportunity to speak about your MS in a positive light and help educate your employer.
- You have opened the lines of communication, therefore if your condition changes and/or you need an accommodation it’s easier to communicate your needs.
Letting your workplace know about your MS can also be a matter of practicality. For example, you may need to disclose information about your MS to take advantage of the Family Medical Leave Act (FMLA), or to seek help from provisions or accommodations in the Americans with Disabilities Act (ADA). (For more on this topic, please see “Disclosing Multiple Sclerosis: Whether and When to Tell Your Employer You Have MS,” from the Spring 2020 issue of InforMS, available at MSCenter.org.)
Ultimately, the decision to inform your employer and coworkers about your MS is up to you. Hopefully you’ll receive an accepting and caring response, and your disclosure will help make your workplace a better place for you.
Practical Advice for Support Partners
So far we’ve talked about three main areas where we interact with people in our lives — our closest relationships, usually at home; our friends and extended families; and our work relationships.
As we discussed earlier, the term “support partners” certainly isn’t adequate to describe every one of these relationships. But the reality is that most everyone who regularly interacts with someone living with MS will at some point have that relationship complicated in some way by the disease. That may be something as simple as a symptom turning up at an inconvenient time, or plans having to be canceled due to fatigue or over-exertion. In cases where MS is causing more significant issues, the impacts on relationships can be more significant as well.
Here we’ve compiled a list of actionable, tangible things support partners can do to promote a healthy — and helpful — relationship with a loved one, friend, or even co-worker who’s living with MS.
DON’T TRY TO DO EVERYTHING — When we see a loved one hurting or struggling, often we want to do whatever we can to help. Sometimes, even when we have the best of intentions, our rush to assist can become overbearing and even unwelcome.
It can be tempting to simply “take over” everything, from routine household chores to doing every little task for our partner. Don’t fall into this trap! Your loved one is very likely capable of most things, or maybe just doing them a little differently. Taking over everything isn’t good for either you or them.
ASK, DON’T ASSUME — Communication is always a key element in any relationship, but perhaps even more so when dealing with a chronic illness and all the complications that it brings. This can be especially true with MS, where signs and symptoms so often remain under the surface, invisible to the outside observer.
A common problem, even when communication seems wide open, is when that communication focuses on what’s wrong, rather than what’s needed. A person who’s experiencing numbness, for example, might describe that feeling or express their annoyance at it. In a situation like this, a support partner can be left guessing about how best to help — and guessing often leads to assistance that might not be so helpful.
Instead, try asking for specifics — what do you need right now, what can I do that will help, what is this numbness preventing you from doing? The answers that come from those simple questions will give immediate and actionable direction to someone who’s trying to help.
LISTEN ACTIVELY — Listening sounds simple, but is often the root of serious communication problems.
People naturally bring their own judgment and feelings about what’s right to every conversation. It’s important for support partners to understand that no matter how long they’ve been on this MS road together, they don’t and can’t know everything their loved one is dealing with. Setting aside judgements and preconceptions isn’t always easy, but it’s critical to effective communication.
Active listening can help us better understand each other, especially when one person is trying to communicate their needs.
Here are five quick steps that can be applied to any conversation that promote active listening:
- Pay Attention. Put down the phone and turn away from the TV. Give the person you’re talking to your full attention, and make sure you understand them and aren’t distracted.
- Withhold Judgement. What they want or need might not align with what you think — but it’s their request, their experience, and they’re the ones asking. Trust that they know whatever it is they need.
- Clarify. Ask questions about anything that’s not clear, or anything you don’t understand.
- Summarize. Repeat the request back to your partner in your own words. If you’ve missed anything or didn’t get it quite right, this gives them the opportunity to further clarify and to make sure you’ve understood them.
- Act. Now that you understand exactly what’s needed, you can put it into action.
It’s also helpful to understand when just simply listening is all that’s needed. Sometimes, a loved one may not want actual help, but just a friendly listening ear. Try asking, “Do you want comfort, or do you want solutions?” Their answer will clearly define what they want and expect from you at that moment.
CARE FOR YOURSELF — When we’re caring for a loved one, it’s easy to let it become our entire focus. But that can quickly lead to physical exhaustion, mental and emotional drain, and if it goes too far, can even result in resentment and other ill feelings for the person we’d intended to help.
Don’t feel guilty about taking time for yourself. Caring for yourself isn’t selfish — it’s necessary and healthy for your own physical and emotional well-being.
For those who aren’t direct care partners, two key elements of caring for yourself are remaining empathetic and understanding. MS is a difficult and unpredictable disease, and sometimes it will impact the routines and interrupt the plans of those living with it. When plans have to change or things have to adjust to accommodate MS, it’s rarely because the person dealing with MS is being inconsiderate or uncaring for you.
In the end, taking good care of your own needs will make you a better support partner.