March is Autoimmune Illness Awareness Month in the United States. Autoimmune illnesses are a group of nearly 100 illnesses caused by a malfunctioning immune system that turns on patients to attack healthy tissue. While the exact cause of most autoimmune illnesses is unknown, research suggests that there are a combination of genetic, biological and environmental factors at play in all of them. 1 in 15 Americans has been or will be diagnosed with an autoimmune illness in their lifetime, chances are you know someone suffering quietly right now.
Symptoms of autoimmune illnesses are wide ranging in both severity and consistency meaning many sufferers of the same illness can present completely differently. This can lead to confusion, misdiagnosis and patients often abandoning treatment altogether due to frustration in seeking a correct diagnosis and treatment. One commonality in almost all autoimmune illnesses is that at many stages the illness is completely invisible. Fighting an invisible, life altering and often life-threatening illness can be lonely and isolating for autoimmune patients. In fact, up to 50% of autoimmune patients present to healthcare professionals with depression-like symptoms during the course of their illness.
In honor of Autoimmune Illness Awareness month, here are five ways you can support anyone suffering from an invisible illness:
1. Listen
It may seem like a no-brainer but listening to your loved one can be the most powerful thing that you can do for them. If they send you articles offering clarity on their illness, read them. Chances are it’s their way of offering support to you and your experience. Too often caregivers and loved ones react to articles and tips defensively thinking their loved one is saying “you’re not doing enough” or “you’re doing it wrong”. Sharing information with loved ones and caregivers on autoimmune illnesses and symptoms is often a way of saying “please believe me” or their way of sharing their experience.
If holding space for others to vent is new to you, there’s no shame in asking questions. Not everyone is born fully prepared to be a caregiver so questions like “How can I support you right now?” can be incredibly powerful tools. Remember that you don’t have to agree with everything someone says just to listen to them. Anxiety and depression are often the first symptoms that present with autoimmune illnesses or they can be the side effects of many medications prescribed to fight them (ahem, prednisone), so your loved one may not always be perfect. Their symptoms may present as irrational fears or concerns. Just listen, and remember that your own mental health is important too. If you need to find a caregiver support group there are resources available for you too.
Perhaps the most powerful three words you can say to someone suffering from an invisible illness is “I BELIEVE YOU.” One doesn’t have to dig too deep into online communities for illnesses like Lupus, Fibromyalgia or Multiple Sclerosis to see that almost as much energy is spent fighting an autoimmune illness as convincing everyone else that it exists. Autoimmune illnesses can break relationships, friendships and end careers because those living with invisible illnesses are often dismissed as attention seeking, lazy or manipulative.
Autoimmune patients can often overcompensate by doing too much on “good” days to prove otherwise. This can actually be more harmful to the patient because they overexert, injure themselves and end up needing more downtime than if they were allowed to rest guilt-free during flares or treatment. The most genuine, loving and supportive thing you can do for a loved one when they are struggling is to believe them.
3. Support
Support can mean a lot of things to a lot of different people. Sometimes support can be listening, sometimes support can be affirming but sometimes support can be offering to watch a friend’s children so their husband can catch a movie. Supporting a loved one with an autoimmune illness can sometimes mean supporting their spouse too. Caregiver burnout is very real and sometimes a whole family can need support. Lending a hand in whichever way you’re comfortable and able, can make a world of difference to a family or individual fighting an autoimmune illness.
Often the treatment for autoimmune illnesses can be incredible hard, consider starting a meal train for a neighbor during MS infusions or offering the mom on your child’s soccer team a day off from driving. Community can make a huge difference in the lives of the chronically ill.
If you’ve ever found yourself rolling your eyes at an inspirational poster, you may be a chronic pain patient. Not every day is filled with warrior spirit and optimistic encouragement. There are going to be tough days, long days, frustrating days and days where you just want to give up. Understand that many autoimmune illnesses are lifelong battles. And while support is usually strong from friends and family after initial diagnosis, those cheerleaders often fade into friends that stop inviting your loved one to parties, stop phoning to check in or just become fatigued by the duration of the illness. Being realistic means pacing yourself, tending to your mental health and understanding that not every day will be easy. If you find your loved one has reached the stage in chronic illness where they want to “give up” start back and Step 1 and begin again. But please, don’t give up.
This list was initially going to be “Four Ways You Can Support Someone Suffering from an Invisible Illness” but with illnesses like Coronavirus spreading across continents it’s important to remember that autoimmune illnesses are treated by turning off the patient’s immune system. Meaning, many autoimmune patients are considered immunocompromised. This means don’t visit if you’re sick, your kids are sick or you’ve recently been sick. Wash your hands thoroughly (do this even if you don’t know anyone with an autoimmune illness) and realize that even if your loved one looks perfectly healthy, their immune system is not the same as yours.
Be careful, be considerate and always, be well.