caret icon Back to all discussions

MG Awareness Month Forum!

What do you wish more people understood about Myasthenia Gravis? Whether it's about symptoms, treatment, daily challenges, or common misconceptions, share your thoughts below.

  1. I wish I knew how to build what life I have left. I am 75, and was very active until MG diagnosis.

    1. We understand that living with MG can be challenging. Please know that we are here to offer our wholehearted support and understanding. Do you have any family nearby who can also provide support?
      ---
      I highly recommend this recent article about services available for older people with MG: https://myasthenia-gravis.com/living/offices-for-aging-services. It provides a guide on various support services and activities that can be beneficial for you.
      ---
      If you are looking for MG-friendly activities with others or even online support groups, I would love to assist you in finding options out there if you feel comfortable letting me know a general region you reside in 😀

      - Jodi, Team Member

  2. it's simple for me. to know that some days are tough and no days are easy. I amy be visible symptoms free but that does not mean I am totally free. I walk slower and hurt. walking more or faster does not help. I need support not coaches

    1. I would like to know how to be a better caregiver. Howbdo I suggest my husband (who has MG) rest more with out mothering him? He told me that if you add an "S" to mother, it's smother. Yikes. Thanks for any input.

      1. Hey there! I think you may enjoy the following articles about tips for caregivers or ways to support those with MG 😀 : https://myasthenia-gravis.com/caregiver/supportive-partner-interview, https://myasthenia-gravis.com/caregiver/helpful-tips, https://myasthenia-gravis.com/living/avoid-saying, https://myasthenia-gravis.com/living/misunderstandings, https://myasthenia-gravis.com/living/planning-ahead-tips; and the following I recommend when it comes to responding to comments from your husband that may come across as hurtful: https://myasthenia-gravis.com/living/choosing-compassion.

        - Jodi, Team Member

    2. I wish I didn't sound like I was constantly complaining and asking for help with things that must seem so simple to do and that I'm just being lazy. I wish I could help them understand what it's really like to struggle with such basic things like breathing! It's my family, I would sure like them to understand what my life is truly like.

      1. Oh, boy, do we have a lot in common. I was a work-acholic. I raised 2 kids on my own, I did everything from mowing 2 acres of land every week, weed whacking, trimming, going to college, working 65+ hrs a week, etc. Then I got Covid. Covid brought on all of my MG symptoms. I have been misdiagnosed until recently. I use to be a clean freak, but now I look around and just cringe. I won't let anyone come in my house due to being ashamed of the mess. My family thinks I am just trying to get out of things. For the last 3 1/2 yrs, I didn't even know what was wrong with me, and the anxiety! Wow! I feel like a complainer too.

      2. Navigating family relations when we live with MG undoubtedly can be complicated. We understand and are here to offer our support. I think you may enjoy the following articles containing advice for helping others to understand MG, finding "family" beyond relatives, as well as how to respond to comments that come across as having poor intentions: https://myasthenia-gravis.com/living/my-explanation, https://myasthenia-gravis.com/living/advocacy-awareness, https://myasthenia-gravis.com/living/chosen-family, https://myasthenia-gravis.com/living/community-building, https://myasthenia-gravis.com/talking-to-others, https://myasthenia-gravis.com/living/relationship-tips, https://myasthenia-gravis.com/living/choosing-compassion, https://myasthenia-gravis.com/caregiver/comment-responses.

        - Jodi, Team Member

    Please read our rules before posting.