Living an Empowered Life with Multiple Sclerosis: An Interview with Peggy Crawford
This week, we were fortunate enough to have a conversation with Peggy Crawford, a clinical health psychologist and programs consultant at Can Do Multiple Sclerosis. Peggy’s job is to help people with multiple sclerosis (MS) live their best lives, and we talked with her about empowering people, adjusting to life with MS, and why having a support system is so important. - Yael
Learn more about Can Do Multiple Sclerosis at mscando.org and more about GeneFo at genefo.com.
Why is living an “empowered life” so important for someone living with multiple sclerosis (MS)?
I emphasize to people in our programs that they are more than their MS. If you look at someone’s life as a pie graph, with different slices representing different parts of their life, MS is really only a slice of the pie. Sometimes people are surprised when I say some of the healthiest people I know have MS, and that’s because they’ve really incorporated this “lifestyle empowerment” principle and decided to work on being as healthy as possible. This applies to all aspects of life - whether it was quitting smoking, focusing on communication, or growing spiritually. Making a concerted effort to live life to the fullest after an MS diagnosis has given many people a motivation they may not have had before.
What can the shock of being diagnosed with MS do to someone’s mental health?
Being diagnosed with MS can come as a real shock that throws you for a loop. Not everyone has the same reaction to an MS diagnosis. Some people are angry, wondering how they can have been proactively healthy and now have an incurable condition. Many people experience a sense of sadness and yearning about the person they once were and/or wanted to be in the future. This feeling of mourning and grieving can often relate to perceived losses of control over their body, relationships, career, retirement, etc.
On the other hand, some people are relieved that after months (sometimes years) of uncertainty in their medical condition, they can now attribute what’s going on with their bodies to something specific. Some, and this goes for people without MS as well, are naturally more resilient than others when faced with adversity – they gather their support system around them, get their ducks in a row, and look ahead to new challenges. You might be surprised that many people underestimate how well they can cope with MS.
Each person reacts differently, but it’s really what people do after the initial reaction that influences their life with MS.
How can someone living with a MS stay positive when it seems like the bad days outweigh the good?
People without MS have bad days, so it’s completely normal for people with MS to have them, too. I often ask people to think about how they coped before they were diagnosed with MS. What did you do back then when you were having a bad day? Did you call a friend who is always there when you need her? Bake cookies for your nieces and nephews? Watch your favorite movie? Exercise? People don’t give themselves the credit they deserve when it comes to resiliency, that ability to bounce back, and sometimes it takes a little encouragement to help them to believe it.
I’m also a huge proponent of what I call an “emotional toolkit” – an actual physical container of things that act as first-aid kit on a bad day. It doesn’t matter what you put in there (a number of friend who always cracks you up, a favorite picture or card, a special gift), as long as it’s meaningful to you. I like to think of it as a “planning ahead” tool. Most health insurance in case you get sick, right? Why not have some emotional health insurance for when you are feeling down or anxious?
People also feel better when they just do something. Sitting around thinking just adds fuel to the fire. Even what may feel like a small accomplishment such as cleaning the kitchen or writing that letter you’ve been putting off can help get you over the hump. Most importantly, if bad days are really persisting, consider talking with a professional.
How can people with MS live life to the fullest from an emotional/mental/spiritual/etc. perspective?
MS presents differently for everyone – some have symptoms that people generally associate with MS, like difficulty walking, but many struggle with symptoms that are largely invisible (pain, depression, fatigue, cognitive issues, etc.).
People who struggle with mostly invisible symptoms can often have a harder time coping than those with the more visible ones because they may look fine on the outside, but can be emotionally/mentally/spiritually exhausted on the inside.
Just as people have physical goals, I encourage them to have emotional and social goals, too. Whether that’s going out with their coworkers for lunch next time they invite you, getting together with a friend once a month, or spreading their wings to pursue a new activity, these emotional goals are just as important as the physical ones. And it’s also important to break goals into smaller ones, so that each time you achieve a step, you gain confidence to move forward. My role is to help coach people through this process to the point where they can coach themselves.
What advice do you have for someone recently diagnosed with a MS and faced with new challenges?
Consider using a combination of strategies that have worked in the past and a few new ones. These might include social support, a healthy lifestyle, relaxing and distracting activities, effective problem solving, and pursuing your passion. Utilizing a variety of coping skills can be so effective in helping adjust to a new normal with MS. Take a look back at how you’ve dealt with tough times, and use those same skills to deal with this new challenge.
It’s also important to stay educated about MS. This includes learning the best way to communicate with your team of healthcare providers. For example, who you should call in the middle of the night if you feel unwell and what symptoms to call about. This is the kind of information that helps you build strong relationships with your providers.
Try also to maintain other aspects of your life so MS doesn’t take up more room than it deserves. Developing a strong support system that includes spouses, loved ones, friends, and children can result in mutual support through this journey that is crucial to your wellbeing.
Why is having a support system, online or in person, important to living life with MS?
Having a strong support system can reduce the feelings of being on your own with a diagnosis or condition. Be sure to identify several sources of support, so if one isn’t available, you can turn to another. Empathic loved ones are great to have in your corner, but so are other people who also have MS and “speak the language”.
Being able to compare notes with others can be very helpful. Some people like to do this in person while others prefer doing it by phone or online. I have some patients who love and flourish in support groups, and others who do just as well without them.
One size doesn’t fit all – nor should it!
What inspires you most about your work?
The staff at Can Do MS and other program consultants are some of the most inspiring people with whom I’ve ever worked. I’ve never met a better group of professionals so dedicated to their work, and the combination of that with the participants in the program really makes us one big family.
Most importantly, I’m inspired and awed everyday by program participants and support partners. When you watch someone with MS accomplish something they’ve never done or haven’t done since their diagnosis, there’s no better feeling. Seeing someone, with the encouragement and help of staff and loved ones, move from a wheelchair to an exercise ball in a room full of other people with MS, many of whom with tears streaming down their face, I can’t help but get as emotional as they do.
Helping people believe they can be more than their MS is what gets me up every day – and I’m honored to be able to do so.
Peggy Crawford, PSYD, Can Do MS Programs Consultant
Peggy Crawford, PhD., is a clinical and health psychologist with more than 25 years of experience helping people with physical health conditions live their best lives. A programs consultant at Can Do MS for nearly 15 years, Peggy helps individuals living with MS and their support partners with physical, mood, coping and stress issues, as well as proactive symptom management.