Life with MS

MS does not exist in a bubble. Those with MS know that, while this condition affects them in ways many people cannot understand, it is not only the person with the disease whose life is touched. Their families are also affected, and, frequently, that brings about changes in family dynamics (the way family members relate to and interact with one another). But not all change is negative. While there will be challenges for families affected by MS, there are also times when MS might be a blessing in disguise, binding families together with a bond that cannot be broken.

Communication is key in keeping a healthy family dynamic; be honest about what you need and what you don’t need. Sometimes, family members may attempt to help you when that really isn’t what you need at the time. They may jump in to perform tasks that you would rather perform yourself in order to keep a “normalcy” about your day. There may be other times when your family members may not know what you need and they might pull away when you really need support.

You may also see a shift in family roles. Maybe the person who has always worked 60 hours a week will suddenly be home more often. Or maybe you have always been the “caretaker,” and now you are the one in need of some TLC. Again, open and honest communication about what you want and what you need are vital in situations where roles change.

Lessons for the little ones

Children are not immune to the change in family dynamics. It is important to be open and honest, but also appropriate for the child’s age. For young children, this may mean addressing changes as they come up. For example, maybe you are not able to perform the yard work anymore because of heat-sensitivity. If your child asks why someone else is doing the yard work now, you could use that as an opening to start the conversation.

It’s common for children whose parent has any type of illness to worry that their parent will die. Confidently reassure your children that people with MS typically live as long as other folks. This can help decrease the anxiety surrounding the topic. Also, keep in mind that your actions, more than your words, will tell a story that your children can believe. Get out and be as active as you can, participate as much as you can, and take care of yourself as only you can. When you do these things, lessons for the little ones will be clear as you work through this diagnosis together.

Modifications put you in charge

Many active families worry that MS may change their lifestyle. While it is true that you may need to modify your activities, you are still able to participate and engage in life with your family and friends. It is important to talk to your doctor, as well as your physical therapist and occupational therapist, about tools that may help.

If you need to utilize a scooter or a wheelchair to access your community, then by all means, do. While using assistive devices may feel like you are “giving in” to the disease, it is really quite the opposite – you are fighting the good fight by saying, “This disease will not define my access to activities with my family and friends.” There are many aids that can help with moving and conserving energy, including canes, walkers, and wheelchairs. There are also a variety of assistive devices related to daily living such as sock aids, reachers, a rocker knife, etc. that can help make regular activities a little bit easier.

Bearing the financial burden

Financial concerns exist for everyone, whether or not you are living with a chronic condition. But the stakes are higher when it concerns your ability to work. It is important to think about future work goals, look at where you currently stand with financial needs, and examine what resources you have available. If you are currently working, make sure to know for what type of benefits you are eligible. If you have access to an employer-provided group disability insurance policy, take advantage of that. This is not something you may need in the near future (or ever), but it is a safety net that would provide you a portion of your salary if you are deemed disabled in the future. Sign up as soon as you have access, because there may be a waiting period before you can receive the plan benefit. By starting the clock on a waiting period, you will be prepared if the need arises to use the disability plan in the future.

You are not alone

Changes in family dynamics can be a challenge, but help is available. One option is that you can talk to professionals who can help you navigate these changes. Many MS centers have counselors or social workers on staff to provide a safe place to discuss family dynamics, changes in your normal routine, and any other feelings you may have. Local support groups offer a great opportunity to interact with others and hear about situations similar to yours. Always keep your doctor up-to-date on how you feel, physically and mentally. They may find that a combination of therapy and prescription medication may be just what you need for optimal health. It is important to remember your psychological health is just as important as your physical health. No matter what kind of changes you may be experiencing, you are not alone.

Different people have varying ways of coping with stress and change. Some of us are “talkers.” Others tend to privately process information before discussing how they feel about the potential changes their diagnosis can bring their family.

People loved you before this diagnosis. They love you now. Lean on them when you need a hand. Reach out to support groups and national organizations, like MSFocus: the Multiple Sclerosis Foundation. Always remember that professionals and your family will be there to help when you need it, but ultimately the strength you need to fight MS comes from within, and it’s been there all along.

 Emily Cade, M.S., CCM, CRC, CLCP is the Director of Outpatient Services at Shepherd Center in Atlanta. Prior to this position, Emily served as the program manager and previous case manager for the MS Institute at Shepherd Center. Emily received her master’s degree in rehabilitation counseling from Mississippi State University and has spent her career working with individuals with chronic conditions such as multiple sclerosis.