Particularly as a person’s multiple sclerosis (MS) progresses, the medical team’s focus will increasingly be on his or her medical, psychological, and social needs. So you may find yourself feeling “out in the cold” — and with good reason. Those people who provide care for someone with a chronic illness have been referred to in the medical literature as “the invisible patients” because their physical and emotional needs tend to go unnoticed.
Because you may need to be your own best advocate in this regard, here are some important things that you can do to ensure your own health and well-being:
Work with your loved one to maintain a care partnership. Caring within families should always be a two-way street — so that you and your loved one with MS are each able to give and receive support from the other, even if the MS becomes more disabling.
When one person feels he or she is doing all the giving and the other is always on the receiving end, the relationship feels out of whack. So talk with one another about how you can establish and maintain a balanced partnership, in which you care for and support one another.
Remember that your physical and emotional health is just as important as your partner’s. The care partner role is both demanding and draining, and we know that care partners tend to neglect their own health while caring for the other person.
If you have trouble remembering to take care of yourself, keep in mind the flight attendant’s message on every flight: “If you’re traveling with a child or someone needing assistance, put your own oxygen mask on first and then assist the other person.” In others words, you can’t be of much help to someone else if you don’t first take care of yourself. So, make sure you
Follow the recommended health prevention and screening measures for your age group.
Carve out time for your own relaxation and recreation.
Seek out support for yourself as needed.
Let your doctor know if you’re feeling depressed or overwhelmed.
Speak up on your own behalf. Particularly if your partner’s MS becomes more advanced, the physician may recommend a treatment strategy that involves you, without thinking about how that strategy may impact your life, health, or comfort.
For example, the doctor may ask you to assist with a stretching regimen or giving injections. Or he or she may ask you to help with the activities of daily living, such as bathing, dressing, or going to the bathroom.
If, because of your own work schedule, health needs, or other issues, you feel that you can’t follow the doctor’s recommendations, it’s important to say so. It doesn’t do anyone any good if the doctor recommends an intervention that isn’t workable. Either the doctor or the National MS Society (800-FIGHT-MS or 800-344-4867) can work with you to figure out what resources you can tap for assistance.
Find constructive outlets for your anger. Angry feelings about this life-changing disease are common. The challenge lies in figuring out how to manage the anger in healthy ways. If you find yourself taking it out on the person with MS or other family members, or dealing with it in unhealthy ways like drinking or eating more than you should, asking your doctor for a referral to a mental health professional is step number one.
Step number two is figuring out how to put the anger to good use — to help you problem-solve and tap helpful resources.
Figure out how to ask for help from others. The best strategy when asking for help is to be specific. Instead of saying to your relative, friend, or neighbor, “I really need some help,” you’ll get better results with a specific request. No one can read your mind, and most people don’t want to risk offending you by guessing.
So, instead, try “I’d like to get out to do some errands on Friday — could you stay with Jim from 2 p.m. to 4 p.m. so I don’t have to worry about leaving him alone?” Or, “Jane needs to get to the doctor next Monday at 3 p.m. and I have to be out of town. Could you possibly take her?” Most people are happy to help when they know what you need and when.
Don’t assume you can do it all alone. Depending on your partner’s needs, you may need to consider hiring some additional assistance. Your healthcare team or the National MS Society can help you choose from a variety of types and levels of assistance that are available in your area.
Let others know that this is about you too. You may get awfully tired of fielding endless questions about how your family member with MS is doing. People tend to forget that MS involves the whole family, not just the person who has it.
So let the people closest to you know that you’d like them to ask about you too, perhaps by saying something like, “You know, it would really make me feel good if you could ask me how I’m doing too, because I’m also living with this disease, and it isn’t easy.”
Can Do Multiple Sclerosis is a lifestyle empowerment program for people with MS and their support partners. In-person programs and online resources, provided by a multidisciplinary team of MS professionals, help you and your loved one develop a true care partnership.
The programs offer information about all aspects of MS as well as opportunities to share experiences with others living with MS, figure out how to communicate and problem-solve more effectively with one another, and live full and healthy lives in spite of MS.