When I received my rare chronic illness diagnosis, I felt like I was all alone in the world and nobody truly understood what I was going through. My friends and family felt sorry for me, but they didn’t understand the extent to which my condition affected my life. I was honest about my struggles, but without firsthand experience, it was difficult for them to appreciate the degree of my pain and other symptoms.
They cannot understand the battle waged against the temptation of giving up, of continually striving for “normality” and not taking anything for granted. They don’t have to deal with stares in public, or frequent doctors’ appointments and blood tests. They don’t know the nurses by name or have their doctor’s cell phone number saved on their phone in case of emergency. They offer love and support, but they cannot entirely comprehend the challenges of living with a life-limiting disease.
For the first couple of years following my diagnosis, I didn’t meet anyone else with myasthenia gravis (MG). I felt completely alone and isolated. No one in my life understood the struggle of having an exhaustion monkey on my back every day. Nor the frustration of wanting to participate in activities I couldn’t, such as sports. Nor the doubt that I could merely engage in conversation or walk up stairs. I hid behind the happy mask I put on my face every day and held back my tears until I was alone on my bed.
Then I discovered online support groups, both international and local. I have met other rare disease warriors thanks to Rare Diseases South Africa. I have found a group of people who know exactly what it is like to have your life turned upside down by a diagnosis. They understand when I have to cancel plans at the last minute or when I have multiple hospital admissions. They recognize the severe health challenges and the struggle to improve my quality of life. We can laugh and cry together, support each other. We can fall apart in a safe space and let others hold us up, or offer support and love to others when they need it.
I attend a monthly meet-up with the MG warriors in my province and I am part of MG social media groups on WhatsApp and Facebook. I count many of these wonderful people among my friends. I’m glad to have met many inspiring people who push me to be the best I can be.
Please don’t misunderstand me, I am incredibly grateful for my friends and family and I wouldn’t swap them for anything. But I am also thankful for the rare disease community. They’ve welcomed me with open arms, without judgment. They’re my cheerleaders who have my back throughout my journey.
Why don’t you join a support group to encourage others and find a community of people who understand your plight? After all, we all deserve a little happiness in our lives!
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.
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