Life with gMG has its ups and downs. But the right resources may make it easier for you to manage everyday living with gMG.
As you go through your treatment journey, self-advocacy is one of the most important tools you can develop. Self-advocacy helps guide your treatment: Your doctor can help you better when you communicate your own needs, desires, and feelings. If you’re feeling unclear on anything, remember: It’s perfectly normal to have questions.
Sharing about gMG with your friends, family, and loved ones is an important part of your life. By communicating effectively about your gMG, you can help build and strengthen your support network.
Sometimes, though, bringing up your medical condition with people you care about is difficult. What will they think? How will you answer their questions? The conversation itself can feel intimidating. But, you can use this guide to help navigate these important conversations in a way that is beneficial to everyone involved.
Sharing (or Not)
Before you tell your friend or loved one about your gMG, remember: You only need to share what you’re comfortable with. You can share as little or as much about your condition and treatment as you choose. Before you start the conversation, consider what parts you want to discuss and which you want to keep to yourself.
Here are some conversation starters you can use:
I’d like to talk about my health…
Recently, I was diagnosed with a medical condition…
Can I share something with you?
Speak With a Goal
As you tell someone about gMG, consider why you are having this conversation. What do you want them to learn? What, if anything, do you want them to do? Even if you just want to vent, a person can only provide the right kind of support if you ask them to.
Try these:
I’d like you to know…
It’s important to me that you understand…
I’d like some support with…
Keep the Conversation Going
Even after you’ve finished your initial conversation about gMG, remember, it’s important to set boundaries for the future. Let your friend or loved one know that some days, you may feel tired and cancel plans. Tell them if you are open to discussing your condition more in the future – and if so, to what extent. During these first conversations, it’s important to set some guidelines for future discussion.
For example, you could say:
In the future, can we…
If you need to know more…
There are some things I’d rather not discuss.
gMG is an unpredictable disease, and its symptoms may interfere with work or school. It may be helpful to communicate this with your coworker, employer, teacher, or professor.
You don’t have to share everything, but consider discussing what kind of accommodations can be made for you. You may want to think about:
- Any work-from-home or study-from-home opportunities
- A guaranteed parking space or drop-off close to the building
- Getting assistive devices, such as a cart to move your things around the office or voice-to-text software
- Including breaks in your work or school day
- Making sure workplace temperature is cool enough
- Reassigning or reducing any strenuous physical tasks required by your job
- Flexible deadlines that help you minimize stress
A support group provides people with an opportunity to share or listen to personal experiences and feelings about a specific disease or treatment.
To further strengthen your support network, consider joining a support group. Your doctor serves your medical needs, and a loved one may serve your personal needs. But each part of your support network has its own unique function. Support groups may help fulfill needs that other people in your life cannot.
These groups provide many different types of support for your treatment path: Whether you want to make new friends, share with others, or just be around other gMG patients, a support group could help.*
*UCB does not endorse any of the following groups mentioned or the content on their respective websites. This list is not meant to be exhaustive and is provided for informational purposes only.