What is a Flare?
I’ve had many people ask what it means when I have a “flare” or “flare day”. Simply put, a flare or flare-up is when symptoms manifest or worsen and you feel sick as a result. Clinically speaking, a flare is "a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or lab measurements." (lupus.org)
In autoimmune diseases, flares are typically seen as return of symptoms or display of new symptoms due to inflammation, usually caused by one or more triggers. Essentially, my overactive immune system has had an "attack", when the immune system cannot tell the difference between a disease and your body’s healthy tissues, so antibodies attack and destroy healthy cells--in my case, healthy connective tissue. This is manifested as inflammation, which can display as any range of symptoms, from fatigue to muscle and joint pain to fever and headaches or brain fog. Sometimes flares will even have physical symptoms, such as rashes, swelling, or ulcers in the mouth and nose.
There are several different triggers that may cause flares, some of which I have discussed previously. They can vary person to person, but there are certain things that are widely accepted as universal triggers to most patients with an autoimmune disease, including:
UV ray exposure
Emotional and physical stress
Extreme temperatures
Exhaustion
Cigarette smoke exposure
Low Vitamin D levels
Incorrect administration of medications
Alfalfa and alfalfa sprouts
Sulfa, Penicillin, and other specific antibiotics
Infections or illness
Sounds like a blast, right? Another common trigger for me, due to the gastrointestinal involvement of my disease, includes eating certain inflammatory foods which can trigger a chain reaction of inflammation throughout my body.
While some of these triggers may seem like very specific circumstances, it can be tricky to avoid all potential triggers in your environment while attempting to live a normal life. Bathing in sunscreen and doing lots of yoga exercises helps, of course, but it can definitely be hard to balance normal daily activities such as exercise while trying to avoid physical stress and exhaustion. This is especially applicable in my riding pursuits, when I also have to keep my sunlight and temperature exposure in mind. And of course, because nothing can be simple, there are good days and bad days when it comes to triggers; being out riding in the sun for hours one day may not cause a reaction at all, but the walk from my car in to the grocery store another day may be enough to trigger a flare.
The management of my disease simply requires a great deal of self-awareness and a lot of personal care. Activities that may be special "treat yo self", self-care rarities for some have needed to become regular parts of my routine. Regular exercise or workouts can be difficult to achieve, as I have to struggle through very regular flares to make it to a point where my body is no longer undergoing abnormal levels of physical stress when exercising. Trying to avoid gluten, dairy, and nightshade vegetables is a daily struggle. Keeping myself stress-free has been a 5-year journey of various tactics, mindsets, spirituality, mental strength, and positivity. As much as I work to keep my disease from running my life, it still is my life, and the things I want for myself require me to keep a firm control on the external and internal factors that may present as roadblocks to the success I desire. In a future post, I will discuss The Spoon Theory, a method that many others with autoimmune or other "invisible illnesses" use to explain the management levels required to make it through a normal day.
In an interview with Billboard Magazine, Avril Lavigne, who is open about her battle against Lyme Disease, mentioned that her disease is "like being gaslighted by her own body". The back and forth, on and off, bad days vs. good ones can be so discouraging, and is a huge factor behind the stigma surrounding invisible illnesses. When there are no external signs or symptoms, it can be hard for others to understand or sympathize with your struggles or pain. Flares aren't always visible to others, and I'm the only one who can differentiate between a Good Day and a Bad Day in relation to my disease.
As a healthy or able-bodied friend or relative to someone with an invisible disease, you may have the ability to provide support and care through simply acknowledging that their symptoms and struggles are real and valid. A symptom as abstract as brain fog or as vague as muscle pain can be difficult to convey to others, but by simply offering assistance if needed or validating these symptoms, you are helping to break the stigma surrounding our daily battle.