Myth Busting: Autoimmune and Immune Affecting Diagnoses
The word autoimmune is one of the most well-known yet misunderstood words I know. Heck, even I was guilty of misguided beliefs about these disorders and those affected by them until it became my own reality.
Many extra-hepatic manifestations of hepatitis C are autoimmune or immune-affecting. It seems pertinent to examine some common but untrue beliefs about autoimmune diseases.
Myths about hepatitis
Myth 1: Time, rest, diet, therapies, etc. will help you recover from your disorders
No. I certainly won’t recover, nor will many others. There are very few autoimmune diseases that are curable.1
Not unless there are some significant medical advancements in both science and the bedside manner of healthcare professionals. Until then, we remain chronic. Some are lucky to have very long periods of remission; other people experience extraordinarily painful and long-lasting symptom flare-ups.
Regardless of how severe symptoms are or their duration, it remains true for both parties: it isn't going anywhere.
Myth 2: My family member has that and they never have that symptom
Immunity is a very complex concept that is not black and white. Autoimmune diseases and their related disorders and syndromes are no different.
Even persons with the same diagnosis may experience entirely different symptoms. Historically, this has been a significant reason why this family of illnesses has been difficult to diagnose.2
While factors like age, race, and lifestyle all play a part in one’s experience of an autoimmune illness, those are not the only determinants of symptom severity. Factors such as genetics, viruses, infections, and even socioeconomic status can all impact a person's experience of a chronic autoimmune diagnosis.3
Myth 3: Taking treatment medications means you won’t have symptoms
When I look back at my experience of hep c before I was treated, I had very obvious and uncomfortable symptoms. My experience of cryoglobulinemia has been similar in comparison, apart from the new addition of debilitating chronic pain.
However, this time there is no cure, and the treatment options are not without serious risks.
With complex internal systems that vary drastically between each person, it seems strange that anyone would assume that all medication will work the same for every person (or work at all, for that matter.) With so much uncertainty in taking medications, it can be very daunting to try or keep trying different medications.
There are other concerns as well when it comes to finding the right medication or combination of medications. It can take months, even years.
The medication(s) may suddenly stop working. The side effects may be worse than the symptoms of the illness that is being treated. It’s just not so black-and-white like that.4
Myth 4: If you can still do ____, you must not be THAT sick
Perhaps the most harmful of these misguided beliefs is this statement. I have received variations of this, especially regarding physical fitness. On any given day, my ability to perform a variety of tasks can differ and fluctuate drastically.
I have been athletic throughout my entire life and still am, though no longer every day. Some days my pain and discomfort are so intense that it renders me unable to do much of anything.
Other days I can do a handstand without breaking a sweat. Some forms of motion are more painful than others.
This is the same for many folks who experience pain as a symptom of their diagnosis (of course, this is not just specific to autoimmune diseases and disorders.).
Sometimes we have to ‘fake it until we make it’ just to get through the day. The messages I received growing up regarding displaying pain or discomfort were quite simple: don’t. This has resulted in an intense aversion to being perceived as a burden or a ‘Debbie Downer.’
Learning to put myself first
I realize I am not ‘terminally unique’ in this mentality. I try and remember that when it comes to being strong, empathetic and gentle, I must prioritize myself above all others.
I've learned this is the epitome of ‘harder than it looks.' However, there is a mantra that I’ve been repeating on the hardest days that helps me remember to be where my feet are: TIODAAT. (Take it one day at a time)
There are many similarities and intersections between hepatitis C and autoimmune diseases. Many of us are familiar with the term extra-hepatic manifestations of hepatitis C virus.5
Many of these manifestations that come in the forms of diseases and symptoms have autoimmune features or are autoimmune diseases themselves. Like hepatitis C, autoimmune diseases may not be outwardly perceivable but can have many painful, embarrassing, and exhausting features.
Like hepatitis C, they can also be life-threatening and disabling. Yet individuals with hepatitis c and or autoimmune diseases often experience feeling misunderstood or disbelieved.
Seeking validation for how I feel
Experiencing that kind of invalidation repeatedly over time can be both damaging and exhausting. However, there is hope for a better understanding of these complex, multifaceted illnesses with forums such as this one.
In spaces such as this, voices of lived experience change into tools that dismantle stigma and prejudice. Even if we do not understand or believe an experience is honest or valid, we can still honor the individual voicing their lived experience by listening with open ears, an open mind, and willingness to understand a new perspective.
What’s the craziest misconception you’ve heard about your chronic illness, autoimmune or not?
How did you respond? Let us know your experience in the comments below.
Do you experience brain fog?