How To Travel with Chronic Illness
December 11, 2016 Kristance Harlow
Chronic illness has a significant stigma attached to it. A lot of chronic health issues go undiagnosed for years. Even when they’re given an official name, a lot of them are ‘invisible’ and misunderstood. Many have severe symptoms that others can’t see. These symptoms can include mental fogginess, difficulty concentrating, mood swings, anxiety, and extreme fatigue. I know all about this; undiagnosed and ‘invisible’ health problems are the bane of my existence. I can’t count the times others have refused to take my health problems seriously because I “don’t look sick.”
I know my experience is echoed by many others. I constantly turn down party invitations, often canceling at the last minute. I don’t like to plan too far ahead for social events because I don’t know how my health will be when the day comes around. I want so badly to say, “I can’t wait! I promise I’ll be there!” But I can’t promise that. It is even worse when I have to cancel something that I planned. Friends often fade away, tired of repetitive excuses for not hanging out. Managing chronic symptoms and a social life is difficult.
Chronic illnesses can make you feel like you lack a lot of power. Both with friends and in the workplace. A lot of sufferers keep their colleagues and bosses in the dark about their conditions for fear of reprisal or being treated differently. Calling in sick because you’re having a severe depressive episode or extreme fatigue can be difficult for others to understand. When you are on top of your game and opportunities are knocking on your door, it is a real buzzkill to be hit with a wave of debilitating symptoms that can last days to weeks. Serious symptoms can be easier to handle at home than if you’re traveling. It is nerve wracking to think about what would happen if you had a flare up on an important business trip. Even if you tell others about your condition, explaining your symptoms in depth can confuse people even more and lead them to think you’re exaggerating.
“Oh, you’re feeling really really fatigued? So am I! I have three kids, two hyper dogs, and a rooster next door that is loud as hell. I haven’t slept since 2004. How could you be so tired? You have no kids and no real responsibilities!” Sure we’re using the same word here, but they are different kinds of tiredness. Research shows that fatigue associated with a chronic illness is usually accompanied by heightened anxiety and depression levels. Research also shows that chronic fatigue can impair cognitive functions such as language, learning, listening, and even memory formation.
I’ve had this discussion with people who have “worse” illnesses than me and many others who don’t have “as bad” as me. We always seem to defer to each other, whoever is the “less sick” person will not really discuss their problems because it isn’t as bad as the other person’s. This can be a cause of concern when discussing your health issues for travel. Maybe you do not want to discuss your health problems or be vocal about your needs in case someone else is worse off than you. When we delve into the sticky territory of “it could be worse” we evoke the fallacy of relative privation. The only good that logical fallacy can do is make someone feel better about their current situation. As in, I suffer from ______ but at least it isn’t “as bad as” ______. Any situation could be worse but it could always be better. It is a good practice to recognize your blessings and be aware of your privilege, but giving up control over your health does not help anyone.
There is a misguided societal notion that assumes that we control our brains and our willpower is what controls the body. A lot of us don’t understand that the body can affect the brain and that the brain can function negatively and be out of your control.
A healthy person can find it hard to believe that you were able to go grocery shopping but couldn’t go to work and be productive. Being sick in our society is thought of as something that must literally keep you in bed all day. The reality is much different – pain and suffering is usually not manifested in our outward physical appearance.
In order to counter the stigma we must open up a dialogue on chronic health conditions. If you are living with a long term health condition, you have to first and foremost not be ashamed. Feeling ashamed leads us to apologize too much. Deborah Tannen, an expert in gender linguistics, says that usually “I’m sorry” is invoked by people who are not cis-men (usually women) to recognize that an unpleasant experience occurred. A lot of the time, it is a sympathetic phrase and not meant as an apology. Saying sorry for canceling dinner with friends because you’re sick is an expression of sympathy over the canceled plans and it expresses guilt over you being the one to cancel. Saying sorry for being ill lends to the misconception that your symptoms are within your control.
You can travel if you have a chronic health problem. One of the most important things is preparation. Do your research on the location, take the proper medications and supplements with you, and be aware of your limitations. Airlines have a form called the Passenger Medical Information Form (MEDIF) where you can explain any special needs you may have. A quick google search will bring up airline sites with links to their MEDIF forms. Arrange with your airline for a meal that meets your dietary restrictions. Do research on the destination. Learn about the kinds of foods on offer and find out what is safe for you to indulge in. Discuss any medical concerns with your doctor. Finding good travel health insurance is difficult, most cover emergencies only. So be sure research the healthcare policies of your destination.
If you are traveling for business, there are a slew of concerns that can arise. Especially the stigma and subsequent discrimination that people face in the workplace. When you are preparing your trip, be vocal about your condition without sounding apologetic or flaky. Choose language that is professional, firm, and authoritative. Let’s say you need an extra night in the hotel prior to the meeting because you know if you don’t rest after the plane ride you’ll be too weak to land that important business deal. Don’t say, “I’m sorry, but can I go a day early to fight jetlag? I don’t want to jeopardize the meeting by getting sick.” Instead say, “I need to arrive a day early.” Don’t answer questions that haven’t been asked. You don’t have to explain everything all the time to everyone. Then if they do ask you why be sure to explain in an authoritative and non-apologetic way, “I require an extra night so I can continue to successfully manage a chronic health problem.”
Use language that makes you the authority on your health, but don’t use language that makes it sound like it is your fault or completely in your control.
Unless you knowingly stuffed your face with a pint of Ben & Jerry’s AmeriCone Dream even though you know you are highly allergic to chocolate, dairy, and gluten – cut yourself some slack. Being sick isn’t your fault and it definitely isn’t something you should be saying sorry for. Even if you did act a bit of a fool and eat that pint of ice cream with allergies, it is no one’s place to judge how easy it should be for you to say no to ice cream.
Even if you think you’re sick because you were a real asshole in a past life and this is some karmic regression (if this is you I’m sending you a comforting virtual hug and a reality-check-slap-in-the-face because IT IS NOT YOUR FAULT), don’t add to the pain by being ashamed of illness. While we’re at it, stop apologizing for being sick. Better yet, other people need to stop blaming sick people for being sick.
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For healthy people, traveling is just an everyday thing they may take for granted, but as a spoonie it can be quite a nightmare!