Receiving a diagnosis of a progressive condition like Multiple Sclerosis (MS) is often difficult for the patient to initially accept. The patient is understandably full of mixed emotions; perhaps angry and afraid while also feeling relieved that they finally what’s wrong. Unfortunately, before being able to process their own emotions, the ones who have to tell their loved ones about their condition.
When the patient has children, this can be complicated. While a parent wants to protect their children from being afraid, they also have to be honest about their condition. Children pick up on parental cues, they will know something is wrong, and if left to their own imagination they will likely come up with something far more terrifying than the reality.
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If you are the patient, the “brain fog” that sometimes accompanies MS may make it difficult for you to communicate effectively if you don’t begin the conversation with an idea of what you want to say.
You may consider starter conversation points such as:
- The doctor told me I have something called MS.
- The doctor is going to work on helping me feel better, but I now that I have MS, I will always have MS.
- Some days I won’t feel well, but I am always going to be sure that you have what you need.
- You can’t catch it.
Talking to Small Children
Most kids under ten think: you get sick, you go to the doctor, and you get better. You may not want to make them worry, however, this age group is more likely to become fearful and confused by your condition. As with all age groups, ask them if they have any questions, and answer as accurately as you can. If you don’t know the answer, “I don’t know,” or “I’m not sure,” are acceptable answers, as long as you make a point to find the answers for them if there are answers to be found.
Talking to Children and Teens
In addition to the talking points above, adolescents from about eleven onward can also understand some of your symptoms and further details. You can explain the pins and needles, or that you have trouble seeing or walking. At this age, you can ask them to pitch in and help, and help them understand that you’re going to go through this together as a family.
Teens may internalize their feelings, so getting them involved is the key to success. Most are internet savvy, so ask for their help looking up information. While you do not want to make them a caretaker at 15, the more you involve them in the process and trust them to be responsible, the more they will feel they have some control over MS.
On days when life is difficult, remember that they are scared and concerned for you. Offering them your love and understanding on the days when you also need some will foster a healthy relationship between you and your children.