Making Progress With Mental Health After Diagnosis

Jodi Enders avatar

by Jodi Enders |

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Lately, with the help of a new therapist, I’ve been making significant progress with my mental health. Looking forward to activities and planning for the future seems a little easier for me now, a year after my myasthenia gravis (MG) diagnosis. Still, as others with MG might understand, our minds can sometimes move faster than our bodies do.

With MG, we learn that our bodies might not always function with the same energy and at the same capacity as they once did. Having fewer opportunities to enjoy our hobbies, do physical activities, and go on excursions may be frustrating. I’m sure I’m not the only one who feels like giving up when MG doesn’t allow us to perform our daily tasks.

We may be proud of ourselves for doing great in one aspect of our lives for a few days, but then we might drop the ball in another area. Personally, it always feels like I’m taking one step forward and three steps back, which can be incredibly discouraging.

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Moderating the Myasthenia Gravis News Forums has opened my eyes to the fact that a significant number of people struggle with finances or other issues, while simultaneously having to manage their illnesses. This added stress is something that people with chronic illness should be able to work to eliminate.

We’re already facing surgeries, worsening symptoms, hospitalizations, and constant care adjustments for our bodies. Even during remission, we face a persistent fear that MG may creep back into our lives. Having a disease that can prevent us from maintaining and supporting ourselves and our families is scary.

Finding people who will take the time to understand our disease and support us along our journey is an important step. We shouldn’t always have to put on a brave face and keep all of our concerns inside. We need people we can vent to, people who give good advice and offer alternative perspectives.

It’s wonderful to dream, and I like to think that the higher the standard I hold myself to, the harder I will push myself, and the more I will hold myself accountable. I’ve just had to learn with MG that I can’t beat myself up if I don’t always excel at what I do.

I give my all in everything I do, but I can’t be perfect at everything. We have only one body to live with, so why not believe in it and support it through both victory and failure?

Let’s keep making our to-do lists and goals larger than we may realistically be able to accomplish — but only if it prompts us to push ourselves rather than set ourselves up for self-judgment. We need to be honest about this.

Let’s also prioritize surrounding ourselves with a diverse support group to whom we aren’t afraid to turn when we need to.

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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Comments

Amy avatar

Amy

Glad you are working with therapist. I know exactly how you feel. I have 3 kids and have held a professional job all through my MG. I have a more mild case but nonetheless. At first I was scared to do anything and had horrible anxiety. As time passes it does get easier but it’s still never far from my mind. I take such good care of myself. Therapist says it’s fine because it’s something I can control in an illness that’s unpredictable and can’t be controlled sometimes.

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steve weisner avatar

steve weisner

diagnosed incorrectly fortunately the second opinion Neurologist nailed it.

Happy this forum exists

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Floyd M Jackson avatar

Floyd M Jackson

I'm glad to be a part of this journey. Even if its like reading COMMENTS and testimonials. I still learn something new daily. Thanks for being here for me.

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Deborah A Dortzbach avatar

Deborah A Dortzbach

So glad you bring your profession to our forum. As an anthropologist, you know life is always evolving and relationships are key with each other and our environment. These are essential elements for us as we continually discover fresh insights into living with our own realities, including limitations sometimes and making the adjustments we need to--sometimes resting, sometimes exploring, sometimes bursting into a new adventure, sometimes just savoring an old one a bit longer. I'm learning to re-discover as well as discover.

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2021 Myasthenia Gravis Survey Results

BioNews Survey Infographic

Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.