Personal Stories

Below are some personal stories from teens who have a parent with MS. You will see that each of their situations is different. You may find you have something in common with them and may find some of their coping strategies helpful.

My relationship with my dad was rather special. We were very close and always went places together. And then the illness changed things. We can't go out and do the same activities as before. But he is still and always will be my dad. I wish he wouldn't be so proud though, then I could help him more. It's hard when you want to help him. I'm happy that despite his illness, we still have a great relationship. It proves that despite all that has happened, even if he can't stand well anymore, he can be a great dad to me.
Anne, 17 years old

My mom gets upset quite easily now. That means more arguments. Sometimes I'd like pack a suitcase and leave. And then my mom says "Come here, let's talk." We each have our say and we're always able to work things out. I've never felt like leaving and not coming back. Everything gets worked out and we get along really well. When she's not well, you can tell because she goes all limp. Then I help her and say, "Mom, are you sure you don't want to go to bed?" She says "No, I have to do something." I tell her "No, that's okay. Go and have a rest and I'll do it." Sometimes she does have a rest but sometimes she stays up anyway. I feel very close to my mom but with my dad it's different. I'd like my dad to understand what I'm feeling. We don't talk enough.
Jennifer, 13 years old

When my dad isn't feeling very well, he's more aggressive and loses his patience quickly. If he asks me for help and I do it just five minutes late, there's a big scene. So I might as well do it immediately and avoid causing a big discussion. The way the illness has brought me closer to my dad is that I prefer a father who is sick who is around, than a healthy father who is never there, who doesn't take any interest in me, and who is always tied up with his work. I like it better this way. We've gotten closer together from that point of view. He's retired now so he's always around. He's there at noon so we have lunch together and talk.
Carl, 16 years old

When I Found Out about the Diagnosis

When you learn that your mom or dad has MS, it's normal to feel all kinds of emotions and to have many questions. Don't hesitate to find out more about MS and ask all the questions you have. It is important to talk about your feelings with your family and friends. You can also call the Multiple Sclerosis Society of Canada and get more information on MS. The more you know, the more you will feel comfortable talking about MS and living with a parent who has MS.

When I found out that my dad had MS, I was about 13 years old and in high school. My reaction may have seemed cold for someone who doesn't know me. But inside of me I felt totally helpless, sad and really upset. I didn't know who to turn to. My parents were really worried, so I just kept everything inside so I wouldn't burden them. For two years, I juts didn't really want to talk about it. Then my mom suggested I see a counsellor. That really helped me sort things out.
Annie, 17 years old

When I found out, I felt really strange. I didn't know how to react. I was frustrated, upset, angry, and really mixed up. I felt all kinds of emotions inside of me. In my head, my mom was obviously about to die. In seven or eight months, say, she would be paralyzed and maybe she would spend 10 or 11 years in a hospital and then die; finished, kaput. Then time passed and I saw that it wasn't really like that and that she was doing okay.
Peter, 18 years old

I found out that my dad had MS when I was 12 years old. He told us when he had his first cortisone treatment. He explained what the disease was like. One thing I wondered about the most was whether it was hereditary.
Jackie, 15 years old

What has MS Changed for Me?

MS can change a lot of things for you. Family outings may be reduced and you may have additional responsibilities at home. Sometimes you might think the roles have been reversed and you may suddenly feel like the parent. Don't try to act as if everything is okay if it's not. Ask for help from people around you who are either members of your family or friends, or speak to a school counsellor or a family doctor. Everyone needs support from time to time.

My dad doesn't accept being sick. He feels useless and thinks that he doesn't really count for us. That affects me more than I thought it would. It makes me sad. It's like he feels guilty he can't work anymore and without realizing it he's mad at my mom who can still work. That often creates tension in my family and that's what affects me the most. I even find myself angry at him, which upsets me because I know he's not acting that way on purpose.
Isabelle, 18 years old

We don't do any activities together any more like camping and traveling. I have more to do at home. I lose my patience a lot. I don't talk about it. I don't feel like it. My responsibilities have changed; I clean the house, do my washing and do the cooking sometimes. I worry a lot about her health and often worry when she has an exacerbation. I guess I find it hard to accept.
Nicolas, 18 years old

I feel really bad when my mother has to go to the hospital. Sometimes we get organized to go to a party with one of her friends who has kids. Then, at the last minute, she doesn't feel well and we have to cancel. Sometimes it's very disappointing because I really like going there. When that happens, I think to myself that it's a drag; I can't go and I'm missing something. But then I tell myself that we can go another time when she's feeling better. Maybe another time, we'll have an even better party than the day when she wasn't feeling well.
Jennifer, 13 years old

My mom started a treatment for MS about a year ago. At the beginning I didn't like it; my mom had to inject herself every other day and I thought she was like a drug addict. She was tired all the time, we couldn't do much together. Now I feel okay about it. Sometimes I do her injections myself. She feels much better now. I don't feel she is really different than any other mothers.
Sarah, 12 years old

Relationship with my Friends

By explaining to your friends what MS is, they will better understand what you're going through and can even help you out sometimes.

I think it would be great if everybody had at least one person to talk to, confide in, and tell their frustrations and innermost feelings to. Regardless of whether the illness bothers you or not, or whether you like it or not, you have to get it out somehow because you can't keep all of that inside you - it's not healthy.
Anne, 17 years old

I felt lonely at first. When all my friends got together, I was with them but I felt alone. I began to talk to my friends and now they understand me. When my mom goes into the hospital, I worry a lot and that's when I talk to my friends. They give me a lot of courage; they help me to relax. They tell me that things will get better and work out for the best and that gives me a lot of courage.
Jennifer, 13 years old

When I invite friends to our house, I warn them from the beginning. I tell them what it's going to be like. That way, they know what's coming and don't ask as many questions. I warn them so if they're not happy, too bad, that's the way it is and I have to live with it. Most people don't mind.
Julie, 15 years old

My Friends' Reactions to the Diagnosis

Often teens worry about what their friends may think. You may be surprised at how accepting they can be. Here's what some friends said,

I felt sorry and maybe a little sad but I didn't act differently with her mom or my friend. I see her as a normal person.
A friend, 18 years old

I asked her some questions and we continued to talk. Nothing has changed between us. She has a sick parent but she's the same as everybody else.
A friend, 15 years old

Nothing has changed; however, I can understand his behaviour sometimes now that I know.
A friend, 17 years old

What I Find Difficult

If you don't have anyone to talk to, you can contact the Multiple Sclerosis Society of Canada or pay a visit to your local MS Society office. Asking for help shows that you are smart and brave enough to get what you need.

Decisions are always made taking into consideration my dad who has MS, so we can't make our own decisions. Sometimes I find it unfair. You have a lot of activities and want to go out, but you can't because you have to think about him. Is he well enough to go out tonight or too tired? It's unfair. The most difficult times I have experienced are when Dad fell down and I had to get him up. It was embarrassing for him and for me.
Nadine, 16 years old

My mom has to stay home and that makes her feel sad and me too. Sometimes I can't sleep because I worry too much. I feel responsible. I'm more depressed than mad and I'm worried about her. That's what I find most difficult.
Daniel, 12 years old

What affects me the most about my mom is that whenever she has an attack, she's hospitalized for at least a week. That makes me sad because I feel a little alone and I ask myself questions like "How long will Mom be in the hospital?" When she goes into the hospital, I feel very disappointed; I don't feel like doing anything. I look grumpy at school. My friends ask me what's wrong and I say "Nothing," like I'm fed up but it's really because my mom is in the hospital. It worries me to think that she might have to go back again.
Jennifer, 13 years old

What Helps Me

Finding a balance: Your life shouldn't revolve only around your parent's MS. It's important to find a balance between your needs and your family's. Take the time to do the activities you enjoy. These activities can act as a release for the emotions you are experiencing.

You can also work part-time to get you out of the house and allow you to forget MS for awhile. Too young to get a job? Getting involved as a volunteer can help you find a job later - you will also benefit from a boost in your self-esteem and gain valuable work experience.

If I'm worried, I tell my dad and then we talk, but I don't worry very often, so I haven't talked to him about it much. "Can you die from it?" is the first question I asked him and he said "No." That made me feel a little better. Now, I've learned about MS and I understand what my dad may feel. We don't talk about MS very often but when we do, we talk openly. I relax by playing my guitar. When I'm feeling sad, I play a sad tune, or I play a game on the computer to unwind. If the atmosphere at home is good, I have more motivation to work hard.
Alexander, 17 years old

When I have questions, I ask my dad directly. My mom also has information about MS which she got at the MS Society. What I know about MS I learned gradually by living with Dad and talking to him. I participated in the MS Society activities and received some information which I think is important for people to have. I think that it is very important to inform young people about MS to help them understand what their parent who has MS is going through. It was great meeting other kids who had a parent with MS.
Isabelle, 18 years old

I can confide a lot in my friends and I tell my mom that she can tell me anything. Also, what helped me the last time she went into the hospital was that we often went to visit her. I could see her a lot, so it wasn't so bad. We know it's not going to be for long, and we tell ourselves that she's going to get better so that helps us.
Jennifer, 13 years old

I read a lot and play different sports. I'm very active. I act in a theatre and try to develop different facets of my personality. I take advantage of life. After what happened to my dad, I said to myself that you never know what tomorrow might bring. I don't always realize how lucky I am to be in good health. Things are going well in school.
Lynn, 17 years old

I work part-time in a restaurant. Then I have some money to go out or buy clothes I like. Since my mom stopped working, there is less money in the family.
Patrick, 16 years old

Some Parting Words from Teens who have been there...

To help others, you need to have information. If a school friend said to me "My dad has multiple sclerosis," the first thing I would do is talk about my experience. It's encouraging for me that my dad isn't affected very much. If my friend's father has to be in a wheelchair, I would say that he might improve and have a remission. It's just an exacerbation, but he could get better because the disease changes a lot.
Alexander, 17 years old

Sometimes mothers say that children are their most precious possession in the world. For me, my mom is the most precious thing I have. That's why I try to take advantage of every moment we spend together. That's what counts for us.
Bianca, 18 years old

You should never lose hope! You have to stay self-confident, keep smiling, put your best foot forward and fill your heart with hope!
Anne, 17 years old