Learning you have myasthenia gravis (MG) is a shock. Coping with the diagnosis and its treatment will also be an ongoing challenge. You may have never heard of MG before yourself. You probably don’t know what to expect down the road or what to say about it all to your friends and family.
While it won’t be easy, talking to friends and family about your condition and what you’re going through can help. It’s an important step to letting those you care about in so they understand better. It won’t be easy to know how to explain or what to say. But getting the conversation started and talking openly are key steps toward finding the support you will need.
Who Should I Tell About My MG?
It helps to let other people know what’s going on so they can help. But that doesn’t mean you have to tell everyone you know. At first you might want to tell only your closest friends and immediate family. But that’s up to you. You may find it helps you to talk about it to a wider range of people you know and those you meet along the way.
There’s no right answer when it comes to deciding who you should tell. To think about what feels right for you, ask yourself questions such as:
- Who are you close to?
- Who in your life do you want or need to support you?
- Who in your life needs to know?
In the beginning as you’re figuring things out yourself, you might want to start with a small circle. You can always open it up to more people as you learn more and adjust.
How Can I Explain so Friends and Family Understand?
There’s a good chance your friends and family don’t know much about myasthenia gravis. So it’s best to start simple. You could start the conversation by saying something like, “Are you wondering why my eyes look droopy or I don’t have the energy I used to have?”
Let them know that you have something called MG that’s making your muscles feel weak. It’s because of your immune system and a breakdown between your nerves and muscles. There’s no cure, but treatment can help.
Friends and family might wonder how or why you got MG. Let them know it isn’t contagious. Nobody knows exactly why some people get MG. It’s a lot like other autoimmune conditions, including others they might have heard about before. Your friends should know your MG isn’t going to go away but that you can manage it with medicine.
Remember, you can talk about it over time. You don’t have to say everything all at once. If it feels right to you, let them know you are open to answering any questions or talking about it more later after they’ve had time to think it through.
Offer your friends and family some good resources for more information so they can learn more about MG and what they can do to help at their own pace without asking you to explain it all. If you like, encourage them to check in with you to see how you’re doing.
How Do I Ask for Help and Support?
The best way to get the help and support you need is to ask for it. Try these tips:
- Ask for help when you need it.
- Assemble a network of friends and family who can help with a meal or errand when you aren’t feeling your best.
- Let your friends and family know what it might look like if you need help and who they should call if it happens.
- Ask your friends and family to spread the word about MG and your diagnosis if that’s important to you.
Tips to Prepare Yourself for Negative Responses From Friends and Family
Just like you needed time to process your diagnosis, your friends and family may need some time, too. Be ready for the possibility that your loved ones may have some denial about your condition or what it means.
They might not understand. They could react with fear, anger, or relief if they’d noticed something was wrong and now have a name for it. Understanding ahead of time that they may not react at first in the way you expect or want can make it easier for you to cope if that happens. Give yourself and your loved ones time and grace as you go through this together.
Talking to Kids About Your MG Diagnosis
If you have kids, even if they’re more grown-up, they are likely to have lots of questions. They might be curious or scared. They might worry you’ll die or that they’ll get sick, too.
It’s OK to talk openly and honestly to kids about your MG. If you feel scared, too, it’s OK to let them know. If you don’t know the answer to a question they have, tell them you’ll find out and let them know later. Don’t hesitate to get them involved in ways that feel good to all of you.
Talking About Your MG to Friends at Work
If you have friends at work, you’ll need to take special care about telling them. You might want to tell them because they are your friends. They may also see the symptoms of MG and ask you if you’re OK.
Before talking to friends at work, it’s a good idea to know your rights. You don’t have to tell your boss or employer about your condition if you don’t want to. But if you feel like your MG is affecting your work, it may help you to let them know.
You’ll need to tell them in order to ask for any accommodations you might need. Make sure you know your legal rights and where to reach out for help if you need it. Communication with co-workers and employers about your MG can be important for ensuring you have the support you need to take care of yourself while continuing in your career.
Support From New Friends When You Have MG
Many people with MG or other chronic illnesses find it helps to join a support group. Support groups are good places to make new friends who already understand MG and what it’s like to have it. You won’t need to explain all of this to them the way you’ll most likely need to with family members and old friends.
Support groups are also great places to get advice from others who’ve faced MG and gone through the process of talking to friends and family about it. You’ll meet people you can turn to if family or friends are struggling with your diagnosis or don’t know how to help. To find a support group near you, ask your doctor or search online at myasthenia.org.
Show Sources
Photo Credit: iStock/Getty Images
SOURCES:
Howard Brickman, person with MG.
Myasthenia Gravis Foundation of America: “Talking about MG,” “Finding MG Support Groups.”
Alzheimer’s Association: “Sharing Your Diagnosis.”
