Approximately 133 million Americans live with chronic disease, defined as a disease lasting three months or longer. A portion of people who fall into this category live with incurable, life-long illnesses that are often "invisible" and interfere with daily life. I'm one of them. My special condition cocktail is 1 part Crohn's disease, 1 part Fibromyalgia, 1 part depression and 1 part generalized anxiety disorder with a garnish of migraines. It's a kicker and not for the faint-hearted.
Almost everyone knows someone who lives with a chronic illness, but what that actually means may be elusive. The daily ins-and-outs of invisible illness usually isn't a topic that people want to talk about honestly because it's difficult to make sense of it. If we do share a slice of unadorned reality we're usually met with a mixed expression of horror, disbelief, and pity and quickly follow up with a "but it's okay!" and a change of subject.
If this subject is too bleak for you, then don't read this article. But if you're willing to put up with a little unpleasantness, you may just come out on the other side with more understanding and compassion for your friends, colleagues and loved ones.
I’m confused about what I’m feeling most of the time.
With various conditions, it can be difficult to decipher what your body is trying to tell you. Am I hungry, nauseated or bloated? Probably all three and I'm just as surprised as you are that that is even possible.
My symptoms can change at the drop of a hat.
On top of having truly bizarre combinations of symptoms, we can also experience rapid changes in symptoms. I may be minding my own business, working at my computer and then get a sudden wave of eyelid-drooping fatigue in a matter of a minute. Chronic illness is nothing if not unpredictable.
There usually isn’t a bright side.
When we talk about chronic illness or hardship in general, we often feel the need to end on a note of hope or false confidence. If you live with chronic illness there's this weird unspoken expectation that we need to overcome our challenges and be an inspiration to healthy people. We need to be able to say "this is a terrible thing that really sucks" and leave it at that because there isn't always a bright side.
Most of my medical decisions are guesses and gambles.
The large gaps in understanding and unpredictability of chronic diseases means that our medical decisions are almost exclusively on a trial and error basis. While you know when you have a bacterial infection that your antibiotic is going to help you, I'm not so sure when I start a new medication or treatment plan. So, while many conditions are "treatable", finding the right treatment for you often means long months, even years, of trying new things and weighing the benefits against the often unpleasant side effects or risks. And once you found what works for you, there's no guarantee that it will always work for you.
I don’t always follow my dietary restrictions or physical limitations.
Haven't you ever cheated on a diet or done something you're not supposed to? You know that eating fast food upsets your stomach, but goddammit you wanted some fried chicken and really salty fries and you didn't care what the consequences were! While our restrictions and consequences may be more extreme, we knowingly break our own rules from time to time because we're human. We would also appreciate it if you skipped the guilt trip because we knoooowww.
I only use accommodations when I think I need them.
This may appear inconsistent from the outside, but with constantly changing symptoms an accommodation that helped one day may not be necessary the next. And something that we've never needed before may suddenly become essential for getting through the day. Whatever accommodations we choose to use are thought-out and we wouldn't be using them if we didn't think we needed to.
I haven’t had a symptom-free day in over 7 years.
This is probably one of the most difficult things for people to wrap their heads around. Chronic pain is just that — chronic. It doesn't matter if I'm smiling, laughing, dancing, cleaning, cooking, laying down or hiking I'm in some kind of pain. You can't see others physical pain, so it's easy to assume that if they're in a good mood, they must be feeling well. But our narrow view of others is misleading. Living with chronic pain means learning to live with chronic pain, which often means ignoring it and allowing ourselves as much normalcy as possible.
Sometimes I have to swallow my pride, independence and even values to help manage my illness.
I believe in making eco-conscious decisions. But when I have to choose between an earth-friendly, labor-intensive way to do something or an easy, not eco-friendly way to do something, I'm going to choose the way that will allow me to live independently without pushing myself into a flare-up. And when even that won't do it, I have to ask for help.
I have to pay for my ability to live independently.
Spending fewer hours at work means taking a pay cut. Health insurance is not optional and sometimes doesn't even cover the costs of the medical care we need. Most "unconventional" medicine (even if it's scientifically proven to be beneficial) doesn't even take insurance. Special diets mean more expensive food. We pay for delivery services and other conveniences not because they are a luxury, but because it's the only way we're going to get shit done. Being sick is freakin' expensive.
I can’t blindly listen to my doctors.
Most people take what doctors say at face value because they're medical professionals which means what they say must be true. But we know very little about chronic illnesses and the advice given by doctors, particularly primary care physicians, aren't always helpful or even highly informed. We have to do our own research, ask the right questions and be persistent to get the care we need.
I am constantly stuck between two worlds.
The kind of advice we are given generally lands under one of two umbrellas: "be strong, push on and don't let illness define you" and "'listen to your body and take care of yourself". As you might be able to see, these are both perfectly valid pieces of advice that just don't meld together very well. We're often also juxtaposed between the mainstream world of healthy people and the reality of those with disabilities that take them out of the workforce. We live in a grey area for which society as a whole has very little room.
Social engagements are few and far between.
Like the above point suggests, we're often between worlds. Most people my age expect you to be accessible and to hang out and to travel and do whatever young people do these days. The reality is if I decide to attend a social event, I probably had to plan ahead and make personal compromises to make that happen. That's not meant to make you feel guilty. If I made the choice to be there, that means it is important to me and I'm just happy to be spending my time with people I care about when I can. And when I say no to plans, it's usually not because I don't want to, it's because I know the consequences are not something I can compromise on at that time.
Tolerating pain doesn’t get easier.
We can "get good" at managing pain, but it never actually gets easier. Chronic pain is still painful. Sometimes I'll wake up one day in the same amount of pain I was in the previous day and even though I managed fine yesterday, today I just. can't. handle it. That's when we have to allow ourselves to rest and recuperate, so we can get up and manage better tomorrow.
Most conflicts between those living with chronic disease and their friends stem from a misunderstanding. The next time you interact with your chronically ill loved one, do me a favor — just believe them and don't make a big deal out of it. Listen to their boundaries, respect their decisions and leave judgment and doubt at the door. Remember that a lot of the reality of invisible illnesses are hidden behind closed doors and it's difficult to know what someone is really going through. A little bit of empathy goes a long, long way.
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