When COPD is Invisible: How to Get the Help and Support You Need
COPD is serious, chronic, and life-threatening disease, but it doesn't always look that way. Many people with COPD don't appear to be as sick as they are, and the worst aspects of the disease are not always visible on the outside.
This makes COPD a “hidden” or “invisible” illness in many situations, which makes it hard for those who don't have the disease to understand those who do. Because of this, many people with COPD have their struggles dismissed or misunderstood, or even downright negative responses from others who doubt or shame their illness.
These reactions can make it difficult for people with COPD to ask for help, especially for those who already struggle with coming to terms with their limitations. When they do ask for support, others around them might still resist understanding or fail to grasp the seriousness of the disease.
Unfortunately, many people with COPD rely on accommodations in the workplace and support from family and friends at home. In order to get that support, however, they first have to get past the obstacle of convincing others to accept the reality of their hidden, chronic disease.
That's why we created this guide explaining how COPD can act as an invisible illness, and how to cope with the challenges that brings. Inside, we'll discuss how to cope with the social stigma surrounding hidden illness and show you a variety of practical tools and strategies for getting support, countering common misconceptions, and communicating with others about your condition and your needs.
What is An Invisible Illness?
An “invisible illness” (also known as “hidden illness” or “invisible disability”) is any kind of long-term health problem that is difficult to see. People with invisible illnesses do not look sick or disabled to people looking in from the outside, as opposed to people with more visible health conditions, such as people who use a wheelchair or show more obvious symptoms.
Essentially, people with invisible illnesses tend to have the following things in common:
- Their condition is not obvious or visible on the outside
- Their health condition is chronic and needs long-term management (it is not an illness that can simply be “cured.”)
- They experience symptoms or other challenges related to their condition on a frequent or daily basis
- Others often have trouble recognizing or understanding their condition, symptoms, or general struggles related to their condition
The term invisible illness includes a wide spectrum of physical and mental conditions, including physical disabilities, mental health disorders, and diseases like cancer and COPD. There are so many invisible diseases, disabilities, and other hidden health conditions that it would be impossible to come up with an exhaustive list.
However, here are a few examples of invisible illnesses to put the term in context:
- Chronic Pain
- Chronic Fatigue
- Traumatic Brain Injury
- Cystic Fibrosis
- Learning Disabilities
Many invisible illnesses are conditions that don't cause obvious, outward symptoms that other people can see. Because they don't fit many other people's pre-conceived notions of what a sick person should look or act like, they often have trouble getting others to recognize or understand their illness.
In fact, people with invisible illnesses are sometimes treated with overt suspicion or disbelief by those who doubt that their ailments are real or as serious as they say. However, it's usually a more subtle prejudice that people with invisible illnesses have to deal with the most.
This can cause a great deal of stress anytime someone with a hidden illness needs to discus their condition with others, and make it difficult for them to ask others for the help and support they need.
Unintentional, subconscious biases cause others to treat people with hidden illness differently than those who fit the stereotype of someone suffering from a chronic disease. Because the condition isn't visible, outsiders are much more likely to act insensitively, downplay their suffering, or make false assumptions about their behavior.
For example, someone with an invisible illness might be perceived as lazy or attention-seeking if they ask for special accommodations or need extra time off to rest. On the other hand, when you have an illness that others can actually see, others are more likely to realize that certain behaviors and limitations are caused by a real health condition rather than poor work ethic or a lack of good character.
Many people with invisible illnesses are used to getting insensitive comments like, “but you don't look sick” or “maybe it's all in your head,” or “shouldn't you feel better by now?” This can be extremely frustrating and discouraging for people struggling with chronic diseases who have no way to “prove” their illness or make others truly understand.
How is COPD an Invisible Illness?
Even though COPD is a serious chronic disease, many people who have COPD don't actually look sick. After all, COPD symptoms vary widely from person to person, and even more serious symptoms might not be obvious to someone looking in from the outside.
Despite the toll that COPD takes on their body, many people are able to manage their COPD symptoms well much of the time and live active, fulfilling lives that make them appear just as healthy as anyone else. Under the surface, however, they could be fighting every day against lung function decline while also dealing with all the pain, stress, and other difficulties that come with managing a chronic lung disease.
What's more, COPD symptoms are not always stable or predictable, and it's common for them to fluctuate from day to day. Symptom flare-ups and exacerbations can come out of nowhere, causing even the most well-functioning COPD patient to decline into debilitating breathlessness and fatigue.
Because of this, someone who normally only has mild COPD symptoms can suddenly get worse, or even need to be hospitalized for an extended period of time. Even minor flare-ups can take a huge toll on everyday life, turning normally-simple activities into extremely difficult tasks.
Even when close friends and family members know about the illness, it can be difficult for them to understand what the person with COPD is going through. They might appear to have their symptoms and daily life well-managed, but in reality they could be struggling with any number of less-visible symptoms, psychological stressors, and other medical challenges.
On top of being an invisible illness itself, COPD can cause other chronic conditions that are often considered invisible, including several that we listed in the previous section. Hidden ailments like chronic pain, chronic fatigue, and mental illness, for example, are all common complications of COPD.
For all these reasons and more, some people with COPD struggle with their illness much more than it appears to those on the outside. That's why it's important for others around them to understand how COPD works, and why someone with the disease might need more help and support at some times than others.
Sometimes COPD is More Hidden than Others
There are certain circumstances in which COPD is particularly unnoticeable, or especially difficult for people on the outside to understand. For example, many people find it difficult to comprehend that someone who is young or who “seems healthy” could still be struggling with a serious, chronic disease.
Misconceptions about what COPD looks like can also make others less likely to believe or sympathize with someone who doesn't show the symptoms that others' expect someone with COPD to have. Because of this, people who don't fit the classic COPD stereotype are more likely to be dismissed or misunderstood.
Let's take a closer look at some of these circumstances to better understand why they happen and how they affect people with COPD. Then, in the following sections, we'll discuss some effective strategies for overcoming these obstacles and helping others' better understand the aspects of the COPD that are not so easily seen.
The Invisible Early Stages of COPD
COPD symptoms tend to start out mild in the beginning and gradually get worse over time. These symptoms are often subtle in the early stages of the disease, but they can still have a major effect on how you feel and how you live.
For example, someone with mild COPD might have to ration their energy and take special care to avoid respiratory irritants that make them feel sick. They may also have to make major changes to their lifestyle, schedule, and living environment to accommodate their medical needs.
Still, many people with mild COPD don't look sick on the outside, even as they face the physical and emotional challenges of adjusting to life with a chronic disease. This can make it difficult for others to understand the seriousness of the disease and the huge toll it can take on your life.
When Exacerbations Suddenly Occur
If you have COPD, you know some days are worse than others, and that your symptoms can flare up without much warning. These variations are normal, but people who aren't familiar with COPD might not realize this, and wonder how you can seem fine one day but then feel very sick the next.
Unfortunately, this can cause others to be skeptical of someone with COPD who experience these ups and downs. They might think you are exaggerating or lying when you say you're not feeling well, or simply not take your pain as seriously as they would if you had a more “visible” disease.
People may also not believe that it can take weeks to recover from exacerbations, and shame someone with COPD for needing to take so much time off to rest. This causes unnecessary guilt and stress, and pressures patients who are still recovering to return to work and normal activity sooner than they should.
All of this ignorance can lead to a great deal of conflict and resentment among less-understanding colleagues, family, and friends, and colleagues. It often causes people with COPD to feel isolated and misunderstood, and can take a major toll on their social lives and careers.
Early-Onset COPD in People Who Seem “Too Young”
While most people don't get diagnosed with COPD until after the age of 40, some people develop it much earlier. In fact, it's somewhat common for the first symptoms to start between ages 30 and 40, at a time when many people would assume you are too young to get a degenerative lung disease.
In rare cases people develop COPD even earlier than that, in their twenties or even teenage years. COPD this young is usually caused by a major lung injury (e.g. severe toxic chemical exposure), or a serious genetic disease such as cystic fibrosis or AAT (Alpha-1 Antitrypsin Deficiency).
Unfortunately, people who develop COPD early are often met with surprise or even doubt when they tell others about their condition. Even when others don't express any suspicion outright, they might be less likely to understand the severity of the disease, or be less sympathetic of their struggles.
After all, there is an expectation in most societies that younger people should be thriving, energetic, and free from serious health problems, a standard that usually isn't applied to older adults. People who don't fit that bill are often misunderstood, and may find it more difficult to get support from others.
For example, a person who appears elderly might seem more in need of help, and more likely to get assistance from others when they need it. In fact, proper etiquette often dictates that people offer help and accommodations to older adults without even being asked.
On the other hand, most people would assume that someone who is young is also healthy and doesn't need any help with physical tasks. This makes it easier to ignore or overlook a young person who is visibly struggling, and might make a young person with COPD less likely to receive assistance if they ask.
How to Make Your Disease More Visible and Get the Support You Need
In many cases, overcoming biases regarding invisible diseases comes down to communication. Because of this, it's important to learn how to discuss your disease with others effectively and get your message across in a clear and compelling way.
It's also important to have backup when you need it, in the form of educational materials, an advocate, or even the force of the law. In the following sections, we'll show you how utilize all of these tools and strategies and more to get the support, accommodations, and visibility you deserve.
Communicate With Others More Effectively
Explain What You're Going Through
When you tell someone that you have COPD, there is a good chance that they will not know exactly what it is. And unless you explain it to them, there's no way for them to know how the disease affects your life.
That's why taking the time to explain your situation directly can be so valuable. It helps others better understand you and what you're going through, and helps correct any misconceptions or false assumptions they might have.
This can go a long way toward strengthening relationships and helping you feel less alone or misunderstood. It can also help avoid tensions or misunderstandings that are based on a lack of knowledge or empathy for your disease.
Of course, you shouldn't have to explain yourself to everyone; you can live your life and ask for help without justifying your illness to everyone you meet. However, in many situations, explaining your condition and what it's like for you is necessary, and it can help you build stronger, healthier, and more understanding relationships.
Here are some tips for dispelling misconceptions and helping others understand your invisible chronic disease:
- Think about what you would like people to know and understand about your health condition. When you have to explain it to someone, stick to the most important things and keep it as clear and simple as possible.
- Try to explain your symptoms in terms that others can relate to or understand. (e.g. “I feel so fatigued in the morning. It's kind of like that feeling you get after a really long, stressful day of work, only it's the beginning of the day.)
- Be specific; instead of saying something vague like “walking too much makes me breathless” you could explain more precisely how the symptom affects you. For example, you could say, “Because of my COPD, I can only walk short distances without having trouble breathing. I have to stop and take breaks often just to catch my breath.”
- You might want to take the time to directly address any misconceptions they might have or any specific aspects of your disease that people tend to misunderstand. For example, you might explain the concept of flare-ups and exacerbations so those around you won't be surprised when one comes up,
- Explain (when relevant) what your physical limitations are, and what you are able and unable to do. This lets others know what to expect from you, makes it easier for them to accommodate you, and may even help others be more patient with any inconveniences caused by your disease.
Be Explicit About Your Needs
As the common advice says: if you want something, you're not likely to get it unless you ask. That counts doubly for seeking help or support with an invisible illness like COPD.
That's why the best way to get help when you have a hidden illness is to ask explicitly for the support and assistance you need. Whether you need physical assistance, emotional support, or specific accommodations, let those around you know exactly what they can do to help.
Remember that other people can't read your mind, and they might not know you need something even if it seems obvious to you. Even if you've told them before, people forget and make mistakes, and might overlook your needs without any bad intentions.
Still, it might seem frustrating when others don't seem sensitive to your needs; for example, if someone invites you to an activity that requires more walking than you can do. But instead of getting hurt or defensive, you could try to remedy the situation with better communication.
In the present example, you could politely explain to the planner or attendees why you cannot come along, and offer to help them find a more accommodating activity for future plans. By speaking up and being pro-active, you give others the opportunity to be more inclusive and considerate of your needs.
When you ask others for help, try to make your requests as simple and clear as possible; this will make it easier and more convenient for others to oblige. You're likely to find that most people are willing to help you out when they know exactly what they can do.
Here are some extra tips for successfully asking for help:
- Take some time to make a list of specific things you need help with (e.g. small tasks around the house like cooking, cleaning, or laundry), that way you'll have an answer ready whenever someone asks you what they can do to help.
- Don't be too general or vague (e.g. “I need help around the house”); instead, give people clear, specific tasks to do (e.g. “Could you come over to help me clean up the house once every couple of weeks?)
- Try to give others flexibility to do tasks according to their availability, and try to match them with tasks that fit their abilities and schedule.
- When others are making plans or decisions that affect you, tell them if there's anything specific they can to do (or any constraints they need to consider) in order to better accommodate your needs.
Learn How to Say No
COPD can make it difficult to keep up with social activities and engagements, especially when your symptoms can flare up at any time without warning. Some days you might just not have much energy, or feel too sick to go out, which can be stressful if you have plans or commitments to keep.
It can also be difficult for friends and family to understand why you can't always participate in activities and events. However, you shouldn't let anyone else pressure you to commit to anything that you don't feel well enough to do.
That's why it's important to learn how to say no to plans and requests when necessary, even when it's difficult to do. Managing your disease, your health, and your own well-being should be your first priority, even if others find it frustrating or disappointing when you have to decline or cancel plans.
It helps to give others advance warning about your condition and explain ahead of time that you might need to cancel plans if you feel ill. That way, if you do have to cancel, it won't be a surprise, and it will be easier for others to accept and understand.
Let Someone Else Do the Talking
Refer Others to Informational Materials about COPD and Invisible Illnesses
As hard as you might try to help someone understand COPD and what you're going through, sometimes it just doesn't resonate or sink in. It can be difficult for some people to understand a disease that they've never experienced, and even harder to fathom what it would be like to live with that disease.
What's more, it can be tiring explaining your condition over and over and answering the same types of questions time and time again. Fortunately, there are all kinds of great informational resources out there that can inform others so you don't have to.
You can find books, blog posts, video lectures, and more that explain anything that you or anyone else would need to know about COPD, chronic diseases, and living with invisible illnesses. Then, whenever you need to explain your disease or your struggles to friends, family, coworkers, or anyone else, you can give them supplementary reading or viewing materials to help them learn more.
These materials can be more than just educational, however; they can make a deeper impression that goes beyond learning new information. Talented writers, speakers, and video-producers can deliver powerful, poignant messages that help others better understand and empathize with what it is like to live with a chronic disease.
Here are some examples of online resources about COPD and chronic diseases to get you started:
- The video COPD Patients and Everyday Activities demonstrates the hardships of living with COPD by contrasting how a healthy person and a person with COPD completes normal, daily activities. This video does a great job of both explaining and demonstrating what everyday life is like for many people with COPD.
- The British Lung Foundation's Youtube channel features several interviews with COPD patients who talk about their experiences and how COPD affects their lives, including this interview with Jim and this interview with Chris.
- The animated video What is COPD? explains the basics of COPD—including symptoms, disease progression, and COPD exacerbations—in a simple and easy-to-follow way, using hand-drawn cartoon figures and diagrams. https://www.youtube.com/watch?v=5fFNGH4U6mI
- The 20-page document Life is Calling: Insights into living with COPD (PDF link) provides tons of in-depth information about COPD and what it's like to have the disease. It includes many case studies, testimonials, and direct quotes from patients living with COPD.
- The article What's It Like to Live with COPD? Offers compassionate insight into what day-to-day life with COPD is like, featuring interviews with a variety of different people with COPD.
- The article 'You Don't Look Sick': What to Say (and Not to Say) to Someone With a Chronic Illness discusses some of the most common insensitive comments people with invisible illnesses hear. It also offers practical tips for how to avoid saying insensitive things and use more kind and understanding words instead.
- The articles 15 Things People Want You to Know About Living With an Invisible Illness and How to Be There for Someone With an Invisible Illnesses both contain lists of more