Questions and Answers about Multiple Sclerosis and Family
Questions and Answers about Multiple Sclerosis and Family
The Diagnosis that Effects Everyone
Multiple sclerosis is not a death sentence, but when you don't know the first thing about what it means or what can happen to you, a diagnosis can be very frightening. Once you get over the initial shock of having MS, you can eventually get on with the business of living. And it not only effects you, but everyone around you. The questions below are meant to give you some things to think about. It is by no means the only set of questions you will have, but it is a place to start.
First of all there are the possible symptoms associated with MS - fatigue, imbalance, weakness, bladder problems; etc. These are probably what led you to the doctor in the first place. Add to that the medications and doctors to treat your unique set of symptoms. Then throw in social, housing, and employment issues These are just a few of the many issues you will eventually deal with on a day to day basis, if you haven't begun to already.
Family Issues
If you have a family and you are the parent with multiple sclerosis, many questions have probably crossed your mind. Depending on the ages of your children at the time you are diagnosed with MS, you will probably ask the following -
How do I tell my children that I have MS?
How much about MS do I tell them?
When should I tell them?
You know your children and of course you don't want to frighten them. Talk it over with your spouse, partner or a family member. Together you can decide the best way to handle talking to your children. The best thing in the long run, is to tell them the truth. They know that something is wrong, especially if you are always tired or canceling outings and special events. They deserve to know if something is wrong and how and if it will effect them. Most likely they will be happy to help you in any way they can - well, most of the time.
Women with MS
As a woman with multiple sclerosis, you no doubt have many questions as well. You may ask yourself:
Can or should I even have children?
How many children can I have?
Will I be physically able to take care of my child?
Should I continue my medications while I'm pregnant?
How does pregnancy effect MS?
If you already have children, you wonder whether you will be able to care for them as they get older?
Again, having a spouse or partner to work through these questions is very helpful. If you don't have children yet, your decision to have children will ultimately effect them anyway. You need to take into account your total situation. This includes your current health and abilities. Several women I know have had children after receiving their diagnosis, so it is possible to have and raise children even with a diagnosis of multiple sclerosis. It helps if your spouse or partner is in complete agreement and support of your decision.
Recent studies have shown that during pregnancy symptoms are reduced. Many women feel better while they're pregnant and have fewer exacerbations. After pregnancy the effects are the same as before you became pregnant, meaning your symptoms may return. For the most part, if you have a strong support group of family and friends to help after you have your child, things should work out fine.
Men with MS
As a man with MS your concerns may be similar. Although you won't physically have children, the thought of raising a family as a man with multiple sclerosis may seem overwhelming to you.
Will I be able to continue working?
How can I work and raise a family if I can't walk?
Will my family think less of me if I can't work?
How long will I be able to satisfy my wife?
Will I eventually become a burden on my wife and family?
These questions are not at all unrealistic. And as difficult as they may be to answer right now, you will, at some point, need to come to terms with them. One of the best pieces of advice we received about living with MS was to expect the best, but do all you can to prepare for the worst.
Talk over the concerns you have with your spouse or partner. Working through many of these questions can help alleviate much of the uncertainties that go along with them. Continuing to dwell on them on your own will only lead to depression which is all too common in people with MS. You need to take control and plan and prepare for what can happen. And after that, you need to try to accept what actually does happen, which I know is easier said than done.
Children with MS
Believe it or not, there are children with MS. If your young child has been diagnosed with multiple sclerosis, you, as a parent, face a unique set of problems. Emotionally, this will be a hard thing to deal with, especially in the beginning. In spite of your own feelings of why did this happen to my child, you will also need to help them deal with their feelings. They may seem to take it quite calmly on the outside, but inside they may be frightened and upset. A lot of how they deal with this depends on you and how you handle the situation.
The questions you have may be along these lines.
How much and when should I tell my child about their diagnosis?
Should we tell their teachers and friends?
Will my child eventually be able to care for themselves?
Or will I always be their caregiver?
And if your child is an adult and you are their caregiver; what will happen to my child if something happens to me?
This is such a difficult issue to even imagine, let alone having to deal with the problems your child will probably face from day to day. But as a parent, we are uniquely equipped to handle whatever our children bring into our lives. A child with MS is no exception. Love them, support them and let them know you will always be there no matter what happens. Also, make sure they know that they can come to you at any time. Whenever they have questions or feel like they are experiencing a symptom they've never had before, encourage them to always let you know.
Family is important. Whether you are a father, mother, sister, brother, or parent of someone who has multiple sclerosis, you can help your family members to understand what it's like to have MS. Let them know what you need from them. Don't always assume that they should know. You may not want to ask for help, but you shouldn't be afraid, or unwilling to ask for help when you need it.
As a Caregiver
As the caregiver or family member of someone with MS, you have many questions about your family member and about yourself. You may ask questions like:
What will happen to my husband, (child, or family member)?
What if something happens to me, who will take care of them?
How can I take care of myself when I have no time?
What resources are available to them; to me?
Why do I feel guilty when I want time for myself?
As a caregiver, you may try to anticipate the needs of your spouse, family member, or child. This is a very difficult thing to do, especially in the beginning. It may take a while before you actually "get it right". One way to do this is to try and put yourself in their shoes. Although you will never know what it really feels like to have multiple sclerosis, you can try to empathize.
They may feel vulnerable, and in many ways they are. If they have to depend on you or someone else to do things for them, they can feel like a burden. Depression may become a problem. You may need to be their eyes, ears, arms, and legs; which may be harder for them than it is for you. Patience is key.
As a caregiver, you need to take care of yourself so that you don't burn out. You need to be healthy emotionally and physically so that you can deal with all of the issues coming at you. Take advantage of respite care and any other help you can get. Take time for you so you can take care of them. Never feel guilty. One of the best gifts you can give them, is a healthy you.
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