What’s your name and where are you from?
I’m Maha and I live in France.
How old were you when you were diagnosed?
I was diagnosed at age 28.
What has your treatment plan been? Which medications have you had the most success with?
I took prednisone (cortisone) and Lyrica for years. Plus the meds you need to take to counteract those meds side effects.
Are you in remission? If so how long?
I am not in remission per se but I haven’t had any relapses in the past three years. So yay me!
Besides the symptoms, what’s the most difficult part of having a chronic illness for you?
I believe the most difficult thing for me, and I believe for many of us no matter our diagnosis, was to mourn the life I’d envisioned for myself, in order to build the one I have now.
Now that I have, I would say that the most difficult part is winter. Sarcoidosis is an auto-immune disease meaning my immune system is on 24/7 and contrary to what people might think, because it’s always on it is less protective against winter diseases (colds, flu etc.).
So now winter is a season I really dread.
What’s the biggest impact your chronic illness has had on your life? Have you had to make any changes to your everyday life?
I had to change everything from the country I was living in to my diet to my outlook on life. It took me almost a decade to do so but I’m happy to have found the strength to undertake that lifesaving journey. That’s why I am able to have the life I have now with sarcoidosis and fibro almost dormant.
Who or what has helped you the most in coping with your diagnosis?
My upbringing was/is my salvation. I was raised by strong and fierce women who taught me to believe in myself and my inner strength.
If it wasn’t for that I would have never sought out a therapist to help cope with my diagnosis. That brief and intense therapy set me on a journey that helps me make better decisions for myself and my health every day!
What goals have you been able to accomplish in spite of your chronic illness? What’s next for you?
Two years ago I was able to complete my master’s in public health/ health promotion & education. Going back to university despite sarcoidosis and fibromyalgia was a HUGE accomplishment for me. Between the fatigue and the brain fog, the long hours and the new subjects matter, it was difficult but I managed to graduate cum laude and top of my class!
My upcoming challenge is to travel Asia on my own. I used to love to travel but found myself bed and couch bound for years after my diagnosis. I resumed my travels in 2019. First in Europe then in Canada and the US and in the upcoming weeks I will be in Sri Lanka.
I’m both excited and a bit anxious but I’m doing it for my former and current self! I have also decided to take up math this year to fight brain fog and train my brain to new things. We’ll see how that goes!
Think back to your diagnosis day. What advice would you give to yourself or someone newly diagnosed with chronic illness?
Take all the time you need to process the news. Then write down all the questions you might have about your diagnosis.
Book another appointment and ask all your questions! Take someone with you as two brains are better than one to process the life changing news you got.
Besides physically what other effects has your diagnosis had on you (mentally, emotionally, spiritually, financially, etc)? How have your worked through these issues?
I enrolled the help of a licensed therapist working with “The Journey” method. It helped me physically, mentally and emotionally. If you are not afraid to really face your inner demons it’s really a method I recommend.
It helped me walk again and grow emotionally. That growth is what helped me start my journey back to health and to a better me. I know it sounds corny but it’s true!
Any other comments or words of wisdom you want to share?
Be patient with yourself, adapting to life with a chronic illness takes time. But you will get there. Trust that you will make it happen for yourself.
Thanks so much again Maha for sharing your journey with us. If you’d like to connect with her her IG is @health_by_maha.
If you’d like to share your story, please reach out. You don’t have to have MG. It can be any chronic illness and you don’t have to be the patient. You can be a caregiver or a loved one. We all have stories to tell.