We already know that our mental state can have a huge impact on our physical wellbeing. Stress can amplify the sensation of pain, it can increase inflammation and push us towards unhealthy coping mechanisms that are detrimental to our physical condition (like smoking) or our general wellness (like disordered eating). We know that there can be a physical manifestation of our sorrow – the Broken Heart Syndrome, and medical professionals are also aware of these correlations. 

Managing stress and difficult emotional situations can be even more important if you’re battling a chronic disease. Although researchers still have a lot of unanswered questions about it, mental and emotional suffering can trigger worsening of symptoms or lower your body’s tolerance for pain and discomfort – which can feel like worsening of symptoms. Recommending counselling or therapy for people living with a chronic disease comes from a place of understanding for the complex relationship between mental and physical health. 

If you’re learning to navigate life with myasthenia gravis, we at FindMeCure want to help you make the informed decisions for your health. This includes providing you with all the available information about your autoimmune disease and today we’d like to emphasise the relationship between MG and stress by addressing the research on it. 

Why is stress bad for people with MG?

As with many other chronic diseases, MG patients have noticed that emotional stress can cause a flare-up of symptoms – something that, although hardly surprising, remains under-researched. There are some studies that seem to suggest a link between stress-related disorders and autoimmune disease and especially – between highly stressful events and myasthenic crisis. The latter could mean close monitoring of myasthenia gravis patients is required during times of intense emotional stress because of the potential risk of developing takotsubo cardiomyopathy – a heart condition that mimics a heart attack but is not indicative of any underlying cardiovascular issues. 

It was already hypothesised that acute emotional stress can trigger a myasthenic crisis but now researchers are starting to see a link between all three – stress, myasthenic crisis and takotsubo cardiomyopathy. The physiologic effects of both acute and chronic stress deserve more dedicated medical research but even with what we have now, it’s clear that MG can benefit from useful tools for managing stress and a calm peaceful environment. 

Stress triggers

If you’re a loved one of someone who lives with myasthenia gravis, it’s easy to miss the specific stress triggers people with chronic conditions can have for the more conventional contributors to stress. The way modern life is structured, however, is only part of the picture when it comes to the particular kind of stress people with MG experience. 

Anticipating the side effects of medication, a myasthenic crisis or a flare-up (or all three) can cause tremendous anxiety that can be hard to articulate. Frustration with the unpredictable and unreliable pattern of MG muscle weakness together with the disappointment caused by the loss of favourite activities or the ability to be productive in their career can contribute to chronic stress and even manifest as depression. 

Mood swings, short temper, emotional outbursts are not an ‘anomaly’, considering the feelings of alienation and stigmatization people with MG experience. The truth is that myasthenia gravis can lead to a significant drop in self-esteem. Our job, our hobbies, our daily tasks all contribute to a self-image that reflects how productive, creative, caring or organised we are – in a word, our way of life helps build a positive self-image. When people with MG lose parts of their previous life, they in a way, lose parts of themselves. 

In addition, the physical changes that myasthenia gravis can cause – drooping eyelid, weight loss or weight gain (as a side effect of medication or change in eating habits), inability to smile if the facial muscles are significantly affected as well as slurred speech – are another factor that affects the drop in self-esteem. 

People who live with MG can benefit from counselling or therapy but they also need understanding and acceptance from their loved ones. Considering their emotions and feelings can make a big difference. 

Some ways to deal with stress

You’ll need to learn to slow down and realise you can’t keep pushing yourself as hard as before you got diagnosed. Accepting your body’s limitations doesn’t mean you have to like your current situation – it just means you have to adapt. Living the best life you can, given your circumstances, is still possible – it’s convincing your mind that is the hard part. 

Try and stay as involved as possible in your community and be real with your friends and family about doing the best that you can. Because muscle weakness is invisible to them, your loved ones may find MG hard to understand. It’s important that they know the symptoms cannot be predicted and even though you promised to go to your best friend’s birthday party when you were feeling better, a sudden flare can make keeping your promise impossible. Don’t beat yourself up and communicate with your friends and family to let them know you still care. 

Develop a better understanding of the specific way MG manifests in your life. You can learn a lot about your symptoms, triggers and limitations by keeping a journal. This can also help you loved ones to understand your situation better. 

Have an outlet for your frustration, anger, insecurities and feelings of helplessness. Be it counselling, talk therapy, art therapy (if your condition allows it), a hobby, a sport if your treatment team gives you the green light or even just a friend who has the mental space to be a good listener as you vent. You can’t hold all of your feelings in and expect them to resolve themselves. Try a mindfulness practice – it can help train your mind to focus on the now and honour your limitations, and it’s one of the best tools for stress management we have available. It’s our thoughts, our interpretation of the circumstances we find ourselves in, that shape our experience. Disciplining the mind can lower your stress levels and in turn, even improve your symptoms. 

If you’re interested in treatments in research that can improve your quality of life with fewer side effects, you can join a clinical trial. Researchers are continuously searching for better, more effective ways to treat myasthenia gravis or at least for equivalents of existing treatments but with fewer side effects, so patients can lead more fulfilling lives. To gain access to one of these treatments under investigation, you can search for trials on FindMeCure.

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