I’m Incredibly Thankful for My Support System
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!
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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.
About the Author
Paul
My signs and symptoms are progressing rapidly.[ progressing just doesn't seem to fit as verb or adjective to describe this disease worsening at a rapid rate. Of course I have no idea what an onset and subsequent progression is supposed to feel like.
I am waiting to hear from a Neuro Opthamologist regarding an appointment.The wait could be months and I fear my breathing muscles aren't willing to give me months.
I am contemplating a visit to the ER and maybe get some answers.
The darkness always presents the unknown.
Pam
Is this a private group?
Florida Francis
Hi, my name is Florida Francis, I was diagnosed with MG in 1981.
Missouri Joan
I am a nurse I do private duty My client is 88 and was just diagnosed with Myasthenia he is really going down hill fast .
DIANE HILLER
Diagnosed with MG in 1993...lifes struggles with this disease. No one understands. Family mad at me saying nothing is wrong....tired of the mental struggle with family members.
Mary B Good
Hi! I have MG and it effects my walking ability. I walk daily with a walker but I pray that I’ll walk w/o one. If not this is my purgatory on earth, which is better than purgatory in the afterlife. I M grateful that I have MG and not something worse. They call MG the snowflake disease because of the diversity of symptoms— and no two snowflakes are alike. We’ve got this! Think positive! We can handle whatever MG throws our way.
Remember every day is a blessing! God bless you!
Merry Christmas and don’t overdo it. Stress causes MG to act up!
Maria Christodoulou
Hi Mary. Your words are very encouraging, thank you so much!
My name is Maria, I come from the little island of Cyprus but live in Liverpool UK. I'm 35 and I've just been diagnosed with MG. I'm also glad it's not something worse as I was initially afraid. It's true that it's a very versatile disease, mine started with occasional trouble swallowing, double vision and continued with tiredness and exhaustion. I now need 10hours sleep to rest and still feel tired but I only started taking meds 2 days ago. I'm staying positive as I've been told treatment will improve the symptoms. I know good mental health is a defining factor and can significantly affect the symptoms and therefore I decided to start counseling and find a MG support group.
I wish strength to you all out there and keep on communicating and sharing as it's extremely helpful to you but also to others, especially the newbies.
Maria
Sylvia Nelson
I just finished 5 rounds of IVIG infusions. It helped with the weakness in my legs and the extreme tiredness all the time. However, I have developed rasheS around my ankles and they itch all the time. ALSO, mY hair is getting really thin. Everytime I COMB MY HAIR , i HAVE TO PULL A LOT OF HAIR OUT OF MY BRUSH. ANYONE ELSE GOING THRU THIS ??? iS THIS NORMAL ??
Lorie
Hi my name is Lorie my husband was told he has MG and on top of that they have also told him he has thyroid, blood sugar,and high blood pressure what can I do to help him
Tony Murray
Any support groups North Wales UK, Diagnosed month back, struggling at moment
Karol
Hi my name is Karol , My cousin was diagnosed in 2017 with MG and she feels lonely and wants to share her experience and hear from Others. please what is the group on Facebook or WhatsApp's.
Leonard
My name is Leonard ,I live in Kenya (Africa)i have a boy 16yrs diagnosed MG,a rare disease here. Kindly get me support group we share our experience.
Randy S Olson
I'm Randy, I've had double vision for a couple of years now. Had cataract surgery six months ago hoping that would solve it. Not so. Went back to the eye doc last week to follow it up after checking me out again, he thinks I may have MG. He sent me out for some blood tests that I hope will help diagnose for MG. Not so familiar with it, but here are some of my ongoing symptoms. When I read, my eyes get very droopy and I can barely keep them open. The page gets dark, when I close my eyes for a couple of seconds, the page gets very bright again for a couple of seconds, then goes dark again, letters are very blurry and with double vision its hard to read. My balance is getting worse, my thighs and arm muscles are very weak, They get especially sore going up and down stairs. Muscles generally weak through out my body at various times of the day then gets better at times. Does this sound like MG? Any thoughts?
I'm getting desperate here!
Randy