It takes serious work to be a patient, regardless of the disease you have. The lay person’s portrayal of chronic illness and the subsequent clinical perceptions of patients leave a lot to be desired in their inadequate awareness, and, at times, acceptance of our reality. These impressions barely scratch the…
Columns
The Value of the Good Doctor
The first thing I was forced to learn very quickly after falling ill is that doctors are only human. It does not matter if they are specialists, general practitioners, or retired; human nature is bound to catch up with them at some stage. As we all know, human nature is…
The Cost of Uneducated Care
During my most critical year with myasthenia gravis, I spent an inordinate amount of time in the emergency room and on various hospital floors. A good deal of the ER staff soon got to know me by name and, while clueless as to how to help my rare but potentially deadly…
I am approaching my 25th birthday, and due to my poor health, I have had to extend my studies a few times. This has contributed to both the academic success I have maintained and the grief of not graduating with my classmates. As a lover of all animals, I decided…
Make Yourself Priority No. 1
When I was diagnosed in 2004, it was a shock to my entire family. We had never heard of this disease and had no idea what it meant for my future. I had to take a year off school due to hospitalizations, treatments, and a thymectomy. I felt like…
I have always believed that we can either allow our circumstances to shape us or we can shape ourselves to better deal with our circumstances. There are few experiences in life that we cannot learn from — we just have to be willing to learn those lessons. The latter is…
Cannabis is illegal where I live, meaning my first interaction with it was also illegal. I do not pride myself on that fact. Actually, it has been the root of a lot of shame in my past. Finding relief in something that many perceive as a “gateway drug” never quite…
Recently, I was chatting with some of the other ladies in my support group who have been on a similar path as me — constant hospitalizations and relapses. They have also been through the heartbreak of having yet another treatment not work and the uncertainty of their future, health-wise. We…
The Guilt of Being Ill
Guilt is a well-acquainted friend for anyone living with myasthenia gravis. Poor health often means that our participation is limited, our range of executable activities are restricted, and our energy levels sometimes feel non-existent. This does not only affect us but also those closest to us, and that is where the…
A huge part of learning to live with myasthenia gravis is figuring out what triggers symptom flare-ups. This is a very personal journey of understanding your body and learning to listen to the subtle cues it sometimes sends to take it easy. These cues can be anything from heavy-feeling eyes, voice…
Recent Posts
- I want to reach for acceptance, but right now, I’m just reaching for a cigarette
- Diabetes may worsen MG by activating antibody-producing cells
- What courage looks like in daily life with myasthenia gravis
- Global clinical trial launches to test self-given, long-acting gMG drug
- Living well with MG means planning, self-awareness, asking for help