Tuesday, August 12, 2014

9 Things You Should Know About Invisible Diseases and the People Who Deal With Them

Whether it is lupus, rheumatoid arthritis, Crohn’s, fibromyalgia, clinical depression, cancer, or any of the multiple conditions that are riddled with invisible symptoms, these diseases are, in fact, very real, and may be affecting someone you know, whether you see it or not. Like air, germs, or a person’s soul, just because you can’t see these diseases, doesn’t mean they aren’t there. These diseases with their invisible symptoms wreak havoc from the inside out, thus leading to many misjudgments because the person “doesn’t look sick”.

1.       Appearances Can Be Deceiving

Just because someone doesn’t look sick, doesn’t mean they aren’t. That mom you see at the park all the time, or the one who always volunteers at her kids’ school; the guy in your office who is always playing pranks and cracking jokes, or the one who coaches his son’s soccer team; the woman who attends yoga class 4 times a week, or goes out with her girlfriends every Friday night, all these people could have an underlying disease that you don’t see and would never guess they would have. Just because a disease is invisible, doesn’t mean it’s imaginary.


2.       They Don’t Advertise

When you do finally find out that the funny guy in your office or the woman who never misses a girl’s night out has a serious condition that you never knew about, don’t take it personally that they didn’t tell you sooner, or that you had to find out John, in Marketing. Most people with invisible diseases like to keep them that way – invisible. While they wish their friends and co-workers would be more understanding of why they seem to always catch every bug that goes around the office or school, or why they sometimes cancel last minute, people with invisible diseases would much prefer to keep the secret to themselves, rather than burden their friends and co-workers with their personal problems.


3.       Don’t Judge, Just Understand

Just because the friend that you thought you were close to chooses not to share their personal struggles with you, please don’t judge them too harshly and just try to understand. This is a good rule for everyone to follow, regardless of whether a person is sick or not. It seems to be something of the societal norm to always opt for the negative conclusion first and the compassionate one last. Just because someone cancels last minute, is always “busy,” or has a lot of doctor’s appointments, it doesn’t mean they are blowing you off or faking just to get out of something. Your friend may be dealing with something that you are unaware of and it should be your first instinct to give them the benefit of the doubt. If it becomes excessive, just be up front and ask.


4.       When in Doubt, Just Ask

If your friend seems to be bailing a lot lately, or the guy at your office is falling behind in his work because of all the sick days he’s taken and doctor’s appointments he’s scheduled, don’t jump to conclusions and assume the worst. Just ask. While most people with invisible diseases don’t like to advertise their condition, if you approach them as a friend and respectfully express your concern, they will most likely be grateful to have one person to confide in and tell you what is going on. Granted, they don’t want everyone to know, but they will be happy to have one person who will understand and have their back.


5.       Please be Respectful of Their Privacy

Your friend has finally told you her secret. That means she trusts you to be compassionate and offer support. It does not mean she wants the whole office, gym, or all of Facebook knowing her personal business. People with invisible diseases keep their secrets for many reasons. One of the biggest ones is they fear that people will look at them and treat them differently. They look healthy and normal on the outside, so people treat them like everyone else, they don’t want that to change and have their friends and co-workers avoiding them, or doubting the truth because “they don’t look sick”. So, please respect your friend’s right to privacy and remember that you wouldn’t want them to blab your secrets to everyone either.


6.       No One’s Symptoms are the Same

Many invisible diseases are multi-systemic, which means they affect multiple systems in the body: heart, lungs, liver, kidney, brain, etc. Even if you knew two people with the exact same disease, their symptoms could widely vary. One may be tired and weak fairly often, experience bouts of pain, and lose a lot of weight, while the other might have more energy, not eat very much while gaining weight, and have memory lapses. It differs from person to person and disease to disease.


7.       Symptoms Can be Unpredictable

Now that you are aware of your friend/co-worker’s condition, you begin to watch them for signs and symptoms that, before, seemed innocuous. You notice that his steadily increasing weight has not only ceased, it is dropping rapidly. This may sound like great news (I mean, who doesn’t want to lose some extra weight so effortlessly), but you also notice that he is more tired than usual and isn’t eating nearly enough food. Perhaps, instead, he is significantly gaining weight. Maybe her hair starts falling out, or it loses its luster; she become wan and pale, or red and feverish. With invisible diseases like lupus, rheumatoid arthritis, depression, cancer, and many more, symptoms can turn on a dime and change for no apparent reason (even to the person who is experiencing them). The best thing you can do is be there for them and offer them help in any way you can.


8.       Excuses are Not Given Lightly

You’ve been trying to get your friend to go to the museum, or a concert, or out for dinner and a movie with you, but the excuses start piling up. You begin to get irritated and that petty, negative corner of your mind starts whispering that she is using her disease as an excuse to blow you off. You are WAY off. People with debilitating diseases have a laundry list of symptoms that prevent them from doing a lot of activities. It irritates them way more than it irritates you. They hate not being able to go out and enjoy the weekend, or spend time doing fun things with their family. They become frustrated and angry with themselves and at their body for not cooperating. They wish, more than anything, that they could go to that museum with you, or just grab a quick drink after work, or even just manage to do some household chores. They do not back out of these engagements lightly. Your friend would much rather be out with you, than stuck at home in bed, or on the couch.  


9.       Don’t Try to Relate, Just Accept

Many times even relatives can’t understand, or relate to the overwhelming issues a person with an invisible disease faces. Family members, who live with the effects of the disease on a daily basis, can find it hard to cope. Some feel that if their spouse/parent/child tried a little harder, or toughened up a bit, they would feel better. Though, that’s not really what they are asking. They are asking that the person with the disease try a little harder so the family members feel better. It’s difficult for anyone to take care of and consistently be understanding of a person whose disease is largely invisible. They usually have to take that person’s word for it that they are in pain, or feeling exhausted, or having a terrible head or stomach ache. Unless the person vomits, passes out, or has a fever, it’s difficult to always take them at their word. Doubt creeps in that they are wussing out, or using their symptoms as a crutch to avoid helping out. It causes tension between both parties. Friends and family feel that they are being taken advantage of, as they pick up most of the slack. The person with the disease feels mistrusted and misunderstood, as well as feeling frustrated with themselves that they aren’t able to relieve their family’s burden. If you know someone with an invisible disease, don’t try to relate, don’t try to make their symptoms make sense, just accept that they are telling the truth and doing their best.



Invisible diseases come in many forms, with many variations. Some take years to diagnose, with numerous doctors’ visits, countless tests, and more questions than answers. Many patients even doubt their own symptoms in the beginning and sometimes question their own sanity, reliability, and objectivity. Feeling those mystery symptoms come and go, wondering if they were really as bad as they thought, watching people’s sympathy turn into skepticism, having numerous doctors shrug their shoulders and say they have no idea what’s wrong, counting out a myriad of hated little brightly colored pills and supplements every day; each of these obstacles in themselves can be daunting, but imagine facing it all while trying to keep your life as normal as possible. It’s hard, isn’t it?  


While you may not be able to relate, or even imagine what someone is going through, the thing they need the most is understanding and compassion. Understanding that says you will try to be supportive and not judgmental, even if it is sometimes difficult, and compassion that says you will try your best to listen and help them in any way you can. Whether it is an auto-immune disease like lupus or rheumatoid arthritis, or a mental one like depression, or carcinogenic like cancer, all people who suffer an invisible disease ultimately need to know they are not alone in their fight.