An invisible illness refers to a physical, mental, or neurological condition that cannot be seen from the outside, according to invisibledisabilties.org There are many types of invisible illnesses, including ankylosing spondylitis, fibromyalgia, psoriatic arthritis, and rheumatoid arthritis (RA).
If you have RA, or another type of inflammatory arthritis, you’re familiar with symptoms like pain, swelling, and stiffness in the small joints of the hands, wrists, feet, ankles, and neck, as well as fatigue and brain fog. RA can also affect other parts of the body like the lungs, heart, and eyes.
Pain, stiffness, and swelling are symptoms of invisible illnesses that are often hidden from society, particularly when they are inside a shoe or a glove or tucked into a long-sleeve top because you feel self-conscious. These symptoms can be difficult for the average person to comprehend, as they are not always visible.
RA is considered an invisible illness because, despite appearing able-bodied, a person with RA may not be as able-bodied as they seem. Abilities and limitations may fluctuate from day to day, leading to misunderstandings and altered perceptions from various sources, including society.
Managing RA also requires countless lifelong commitments, including multiple medical appointments, which may be inconvenient, costly, or difficult to access. The medications used to treat RA can be life-altering, but also may require frequent lab monitoring, daily pills, regular self-injections, and sometimes even lengthy intravenous infusions. These medications usually have side effects, too, including worsened fatigue and brain fog and physical effects like thinning hair or even hair loss.
What Living with an Invisible Illness May Mean for You
Whether you have RA or another type of invisible illness, there are some realities that you may have to face. Here are a few truths from my personal experience.
Getting medically supervised pain control may be harder for you.
Since the pain is not measurable, consistent, or visible, it’s difficult to justify treatment and long-term management. This may require more office visits and more explanations.
Due to this unfortunate reality, it’s important to stick with the facts when describing your pain and be sure to emphasize how much the pain is impacting your life. Also, keep a pain journal recording everything that has worked and has not worked for you in the past for your specific pain.
You utilize journals, tracker apps, and planners like a boss.
Invisible symptoms are difficult to track and writing them down and organizing things by dates will become very useful to you. Get tips on how to journal with hand and wrist pain.
You have a lot of commitments that others may never know about.
Your family, friends, and employers need to be extra flexible with you and your time. Many of these medical appointments may change last minute, too, and this can impact plans and schedules. Be sure to pride yourself on managing these extra commitments. Show yourself some love and compassion when juggling schedules becomes a challenge.
Every day is going to be different.
Tomorrow will never be the same as yesterday. Today may come with surprises, too. Since RA is invisible, sometimes you can’t even see the symptoms or flares coming. Always remember that whether you have an invisible illness or not, you are never the same as you were yesterday. We are always changing, always growing, and always evolving. Just roll with it.
You will lie often to protect yourself.
A common response to pacify others around you is often “I’m fine” — when the way you are feeling is so much more complex. (And this is totally okay.) You can wear your costume of wellness as it suits you. You only need to share what you want to share.
People will label you.
Drug addict. Lazy. Unmotivated. Whiney. Out-of-shape. Uncommitted. Although it’s absurd, it still hurts.
Stay true to yourself. If the labels are truly limiting your health care, consider finding a new health care team.
People may pity you…even if you don’t want pity.
Sympathy and empathy are often confused. Sometimes this is well-intended. Sometimes this is poorly received. Sometimes it’s kind. Sometimes it’s malicious. Sometimes friends and family simply don’t understand.
In most cases, people’s pity, sympathy, and empathy comes from a place of love. If you view it as coming from this place of love, it won’t hurt as much.
Guilt is real.
It’s real from yourself and it’s real from others. Others can’t always see what struggles you have or what you’re missing out on. This might make guilt more difficult to manage and work through.
Do your best to remember that it’s your life and you make the rules. This can help you avoid a lot of guilt.
Depression and anxiety can run wild.
Oftentimes, you’re stuck in your own head with spiraling thoughts. It’s essential to learn to manage those thoughts to manage the emotions in an independent way.
If you’re struggling with depression and anxiety, it’s helpful to seek counseling, coaching, and support.
Strangers will give you unsolicited advice.
People will often tell you to do more yoga, eat vegetarian, take X herbs. Try to reply with “Have you had a lot of success with X? Tell me more.” Making the conversation about them will take the attention off of you. If this doesn’t work, experiment until you find your own way to navigate this unsolicited medical advice.
You can only control what you can control.
This means other people are not in your power. How other people act, think, and feel may create some uncomfortable feelings for you, but you can’t control them. End of story.
You have a superpower.
When it comes to having an invisible illness, your superpower is disclosing only what you feel comfortable disclosing. Unlike a broken arm or abnormal physical features, the world does not see RA right away. This gives you some extra power in deciding whether to keep your condition to yourself or share the details — only you get to choose.
Be a More Proactive Patient with ArthritisPower
ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.