The Nature of Autoimmune Awareness Month, and Its Diseases
March, which is Autoimmune Awareness Month, involves sliding into spring, a time of year that coincidentally reflects an autoimmune condition: shifting, transitional, and unpredictable.
An autoimmune disease occurs when the body’s immune system attacks itself. The very organs that are supposed to keep the body safe become so overactive that they damage it instead. So far, the exact reason for this is unknown, though we have reason to suspect genetic and environmental factors.
Some autoimmune disorders are crippling, causing pain, financial devastation, or even disability. Others cause mild discomfort and are otherwise manageable. But just because a disease is under control doesn’t mean it shouldn’t be acknowledged. Any deviation from the standard — healthy, operational, natural immune function — deserves our attention, as it can affect every other part of the body if not treated properly.
Millions of people struggle with their health every day in this regard. But since some autoimmune disorders present only mild symptoms, they go unnoticed. Because of this, we sometimes refer to them as “invisible illnesses.” We can feel the effects, but others can’t see them. On the surface, we look completely normal and healthy.
My diagnosis — granulomatosis with polyangiitis, a type of vasculitis — definitely runs the gamut as far as severity. It was far from invisible when it first made itself known in my body. I suffered months of illness before doctors finally determined what was going on. Even then, the medications I had to take the following year had such grueling side effects that it made me question which was worse, the underlying symptoms or the treatment.
While some autoimmune diseases are life-threatening, others are relatively harmless as long as they’re kept under watch by a specialist. But a lack of awareness and crucial resources can cause even the least scary case to develop into a torrential disaster. This is particularly true for people who live in rural areas and don’t have ready access to the right specialized care.
Since autoimmune disorders affect so many people, many are household names, such as lupus, rheumatoid arthritis, Celiac disease, psoriasis, and certain kinds of diabetes. Others require a specialist to recognize them in the first place, let alone to manage the symptoms and the medications that might be required to treat them. The fact that this range of disorders resides within the same family shows the vast spectrum of ways in which the immune system can malfunction.
Whether mild or life-threatening, the symptoms of an autoimmune disease can feel to patients like we are battling a war of attrition. Tasks take longer than we expect. The mental pressure to stay active can be overwhelming. And with the great majority of autoimmune types, there is an ever-present risk of fatigue that threatens to bring any productive day to a shuddering halt.
As with any health condition, we find solace in a supportive community. Those who understand our plight are best able to provide a listening ear and help us balance our mental health. The only thing worse than feeling sick is feeling alone while suffering — and that can be avoided if we surround ourselves with the right people.
Knowledge and patient care in the autoimmune family of diseases have only grown over the past few decades. To help persist in making these diseases sound less rare and more familiar to anyone, sick or well, the best thing you can do is be your own advocate.
Learn as much as you can. Openly communicate with your healthcare providers. Talk to those around you so that they understand what you’re going through. March may be the designated time to raise awareness, but that doesn’t mean you can’t continue to do so in April and beyond.
The phenomenon of illness affects our humanity, drawing us closer once we understand others’ physical struggles. Awareness helps boost the field of science and medicine, support those of us who live with disease every day, and steadily work toward a better quality of life for us all.
Note: ANCA Vasculitis 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. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.
Comments
Zoe
Great piece of writing and well said. I too have this rare, Fugly, mind 'F' of a disease and it has caused some extensive damage to me in a way that I would never have imagined having to navigate through but I'm here, I'm still very fortunate compared to how some people discover they have it and I'm grateful that I can find my way through and be strong and positive no matter what.
Thank you for speaking up and raising awareness of GPA/WG. Take care and I wish you well on your road to healing and being back in charge of your journey x
Allison Ross
Thank you, Zoe! Wishing you strength and peace. You're not alone!