Hello there! At the time of writing this, I am 45 years old, I have a demanding career, a loving husband, two cats and…. autoimmune hepatitis, which is also know as AIH. I received my diagnosis in my early 20s, so within my own life I have a lot of hands-on experience with this disease.
Over my journey, I have mostly enjoyed good health, with a few hiccups along the way.
When I was diagnosed in the early 90s, I didn’t have access to the internet at home or at work. Social media did not exist. I had no awareness that there was a local Liver Foundation until 2008, which was over half way through my journey. It wasn’t until then that I met, or even spoke to another person with autoimmune hepatitis.
I started this blog because to this day, outside of forums and random pages, there is very little information out there from the patient’s perspective. People tend to get on health forums when they are really really scared, they post information about their current state and sometimes a bit about their recent journey of trying to get a diagnosis. We often don’t really get a clear sense of what life was like (health wise) leading up to their diagnosis, or how the disease and symptoms progressed or subsided. Through my ebook, I walk through some of my health concerns prior to diagnosis, the process I went to during diagnosis, and hiccups I had in my 20s, versus my 30s, versus my 40s.
I am not a literary expert or an English major. I am not a medical professional. I am not scrutinizing my words too much, and I am writing pretty freely about my experience with few filters. Anything I write is subject to my experience, my lens and my opinion.
I am a person that considers herself healthy despite this disease (often) silent, running in the background. Since it is (mostly) silent, I have very few sick days at work and miss very few engagements due to any kind of illness. Most days, I feel perfectly fine and do not think about autoimmune hepatitis. Even when I take my prednisone and Prograf prescriptions, I don’t think about. I take my pills as naturally as I would drinking a cup of coffee in the morning.
I also know when I was diagnosed 20+ years ago, that I wish I could have met, talked to, or read about someone that was 20 years into this disease and still thriving, so that I could have some idea of what to expect.
Having said that, through events run by the Canadian Liver Foundation, I have met people with all different kinds of liver disease, in different stages of their journey. I have talked to a few with AIH that have had a tougher time than I did tolerating prescriptions.
The last thing that I want to do is slap up a website and say that because I have AIH and I am fine and you will be too. However, what I can offer you is my story and my experience so that you have an example of one person’s journey with the disease.
Where the path gets muddy for me, is that I am not always clear on when my wonky symptoms are related to AIH, my medications, stress, or just simply the fact that I have a chronic autoimmune condition running in the background. For that reason, I just talk about anything that has impacted my health journey, and maybe that will help others tie together their symptoms. After all, what I have heard is that autoimmune diseases like to travel in groups.
I hope you find the information helpful.