How to Support Someone with an Invisible Illness
For millions of patients, hearing the words, “but you don’t look sick” is incredibly demoralizing. You don’t need to see it to believe it.
Imagine spending most days debilitated by symptoms, but constantly being questioned about the validity of your illness because the people around you can’t “see” it. This is the reality that patients with invisible illnesses face every day.
Not only do we have to manage our diagnosis (which can take years to obtain), but we also have to deal with comments about how we “look healthy” or should just “get more sleep” or “drink more water” to improve our conditions. These comments can come off as dismissive, and often make invisible illness patients feel as if we are not trying hard enough. When a friend, family member or coworker makes comments like these, it minimizes the struggles of managing such conditions. If you are not feeling heard or supported, it makes it incredibly difficult to seek help, or even communicate their pain out of fear of being believed. This can ultimately impact our treatment outcomes. This is why it is so important for family, friends, and colleagues to learn how to support and validate those in their life dealing with a chronic, invisible illness.
What is an Invisible Illness?
If you have a chronic condition with debilitating pain and fatigue symptoms, you probably have an invisible illness. These conditions interfere with your daily way of life, but can’t be easily recognized just by looking at someone.
While there is no singularly accepted medical definition of what an invisible illness is, examples of these types of conditions are:
Inflammatory Conditions like Long Covid, POTS, ME/CFS, and Fibromyalgia
Autoimmune Conditions like Sjogren's, Rheumatoid & Psoriatic Arthritis, and Lupus
Gastrointestinal Conditions like IBD, Ulcerative Colitis, Crohn's Disease, and Celiac Disease
Thyroid Conditions like Hashimoto's, Graves' Disease, and Hypo- or Hyper-thyroidism
Neurological Conditions like Migraines and Multiple Sclerosis
Women's Health Conditions like Endometriosis, PCOS, and Pelvic Inflammatory Disease
Mental Health Conditions like Depression and Anxiety
How Can I Get the Support I Need from my Community?
If you have an invisible illness, your friends, family, and colleagues may be wondering how they can best support you, here are a few tips you can share:
How to Support Someone in Your Life with Invisible Illness
Believe them. Trust that they know their body enough to know that something is wrong. Try to refrain from using language that diminishes their feelings or symptoms and be as sensitive as possible. Examples of this unhelpful language include “You look fine to me” or “Are you sure it’s that bad?”
Validate them. Express empathy and understand that just because you don’t necessarily understand their pain, doesn’t mean that it’s nonexistent.
Offer to help them to seek care. Oftentimes it’s difficult for people with an invisible illness to seek care because their symptoms may be inconsistent or hard to describe. It also doesn’t help that these illnesses are often very difficult to diagnose. Encourage those you care about continue to seek out the care they deserve no matter how long it may take to get a diagnosis.
Advocate for them and support them advocating for themselves. This includes supporting and arguing for their case with physicians and insurance, if need be. Also, try to help them brainstorm the right questions and tests to ask for.
Educate yourself. Once they receive a diagnosis, try to learn as much as you can about it. The more educated you are, the more sensitive you can be to their condition and the more you can support their care journey.
Take care of your own mental health. It’s easy for someone else's illness to take a toll on those around them. Make sure you’re taking the time to do the things that make you happy and communicate when you need to take time for yourself. You can’t support those you care about if you’re not in a good state yourself.
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