Chronic illness is many things. It is painful. It is expensive. It is confusing. It is heartbreaking. But one thing it is that I'm starting to realize just magnifies the longer you're sick is this: It is isolating. In many ways.
Many people with chronic illness are not able to hold a job outside the home, so any social interaction that would come with that is gone.
Further, those with chronic illness don't get to leave the house much, for things like grocery shopping, date nights, or anything, because they are not able. With so few spoons a day, being able to get out for anything besides doctor appointments is a luxury. This result is that the vast majority of their time spent alone. Yes, technological socialization helps, and is all a lot of us have. It can be both a priceless outlet and connector to those we love. But we all know it's not the same.
So you have the no-job thing giving you little reason to leave home and the so-few-spoons thing keeping you at home when you would otherwise go somewhere. Then add in any increased self-consciousness brought on by any abnormally visible proof of your invisible illness, say weight gain, skin issues, or hair loss, and you're really not going to be leaving the house much. I am typically home for weeks at a time.
And the longer this goes on, the more isolated you become.
Other things that are second-nature to the average person are often off-limits to those who are sick. Besides being able to leave the house, go shopping etc., such as going out to eat or simply eating the food served at a family get-together. Due to allergies and sensitivities, many foods that the average person would never think twice about eating become off-limits -- whether we like it or not. This means little to no trips to get fast food and precious few (if any) meals at restaurants. We frequently or always have to bring our own food to events -- you know, if we're even able to go -- and if there's a restaurant that offers enough options, we have to make multiple odd requests when ordering.
I have been surprised to notice that this can somehow be taken as an odd kind of arrogance when we say, "Oh, I can't eat that," when in reality it's just one more way we're trying to combat our illness and take care of our bodies. Saying no to a food does not mean you think you're too good for it or better than those who eat it -- it means either you're allergic to it, you know it's much better for your body to not have it, or that your body is so sick that you're lucky enough to have leaky gut syndrome, a condition where your intestines are so screwed up that they react like you're allergic to a food. Eating out or eating together as a family is a very common, enjoyable way people get together and socialize. It's something that is just part of American life -- and it's just one more normal experience rendered abnormal or nonexistent for those of us who are sick. And that is something that the average person just cannot understand, which leads me to the next way that chronic illness is isolating.
Let's face it: there are more healthy people in the world than there are chronically ill, whether house-bound or nearly house-bound. While chronic illness is not a rare thing, it's certainly not the common experience. People magazine recently published a story about Avril Lavigne and her battle with Lyme disease. And while I am so sad for her but so glad a major magazine covered her story, I couldn't help noticing the underlying tone of disbelief at what she has dealt with:
"I was bedridden for five months."
"The Canadian singer has been recuperating at her home in Ontario, where she spends time with family, watches movies and keeps up with fans through social media."
"Her mom moved in to help take care of her, while her husband ... stepped in when he could during breaks in his tour."
"There were definitely times I couldn't shower for a full week because I could barely stand," she says.
I know this article was written objectively with the attention-getting highlights included. But I can't help feeling the writer's kind of distanced marveling and that all of these details were as foreign to the writer -- and to the publication's audience -- as deciding to go live on Pluto. Even though -- as far as we know -- I don't have Lyme Disease (test results to come this summer -- stay tuned!!) all of her comments registered multiple mental head nods with me. I haven't felt exactly what she felt, but I certainly understand the general misery. And I know that understanding did not register with the majority of readers.
All of that to say, the chronically ill life is all I know anymore. But most people mentally reel at even the thought of it. They haven't experienced it, so they aren't even minutely close to beginning to get it. Even if you meet and befriend half a dozen other spoonies, most of the people you know probably have no clue what your life is really like. And just knowing that is incredibly lonely and isolating.
What's more, I'm finding as time goes on and I live with this more and more, it doesn't get easier. I just inevitably become more and more isolated from everyone else. And every added experience -- a new doctor, a new diagnosis, a new symptom, a massive amount of bloodwork all being "bad" for no reason and having to do it over, a traumatic test that demands way too much of your hair -- pushes you farther and farther from identifiableness with those around you, more and more ways you are different from practically everyone else, and more and more reasons for others to not get you and not want to.
Of course, all of this results in severe emotional isolation. The emotional effects of all of the above are hard to put into words. But while we would not wish what we have and what we live with on a daily basis on any of our loved ones, knowing that they don't truly get it, some not even wanting to try and some trying their hardest but never quite being able to simply because they haven't experienced it, is very isolating and emotionally crushing.
When you grow up having everything in common with your best friend and then get deeper and deeper into this medical nightmare that, listen as faithfully as she might, she will never understand. When your struggle before going out is not deciding what to wear but agonizing over how to style around your illness-and-medical-test-induced lack of hair, what you need to pack to eat while you're gone, and if you can even go at all. When new problem on new problem keeps coming to the point that all you can think is What. the. crap. next? When you marvel at the thought of anyone living day-to-day without a thought to how they're feeling, or test results looming over them, or if that new symptom is nothing or something horrible -- and then realize that that is indeed the average person's life.
It's a very lonely place.
I hope to be back with a post on how to help those you love dealing with this, but for now, please take this glimpse into the chronically ill life to heart.
This post was originally published here and is reposted with permission.
Kacie Fleming has crammed a lot of learning about health and treatment options into the nearly six years since being labeled with fibromyalgia. She lives in North Carolina with her husband and spends her days (and most nights) working on her handmade jewelry and subscription box business.
Become a Member
Connect with others who are living with fibromyalgia.
MyFibroTeam is not a medical referral site and does not recommend or endorse any particular Provider or medical treatment.
No information on MyFibroTeam should be construed as medical and/or health advice.