Well-known symptoms of my chronic conditions include pain, fatigue, cognitive impairment, and digestive issues. Things many of us with chronic illnesses expect to deal with every day. But we take on much more than the list of symptoms that come with our official diagnoses. There are also what I call “outstanding symptoms,” because YAY! they’re so freaking awesome and outstanding!
OK, that was sarcasm. They’re called outstanding symptoms because they are the struggles we deal with that are outside the symptoms of the disease itself.
I say it all the time. Don’t get sick unless you’re rich. Chronic illnesses are all about maxing out our insurance deductibles. Even those of us who try to manage our conditions without medication are shelling out a lot of extra cash trying to get our bodies to behave. I spend a small fortune on vitamins and supplements every month. And I have to continually remind the well-intentioned people who love to recommend alternative treatments that I simply can’t afford it.
Oh, where do I start? Insurance is a nightmare for many people with chronic conditions. Many people keep jobs they’re miserable in because they need to keep their benefits to maintain necessary treatment (it breaks my heart how many would-be entrepreneurs have to forget their dreams). Even so, insurance companies often think they know better than your doctor what medications you should have, and cost is always ranked WAY above your actual health and comfort. You’re lucky if your quality of life ranks at all, when it comes to approving treatments and medications. There are so many stresses related to dealing with insurance companies, which is ironic, since stress is a huge trigger with a lot of conditions.
Medication Side Effects
This one is pretty much self-explanatory, but I’ll explain anyway, since it deserves the attention. We have terrible things going on in our bodies. Then we take medications that do other terrible things. A pill rarely fixes the issues. It simply gives us a choice of which issues we want to live with. That’s if we’re lucky enough for them to work at all … and not stop working.
Chronic illnesses are cruel thieves of time. They steal it by forcing us into bed for days at a time. They steal it by making our brains not work right. They also steal time when we’ve got to head to urgent care or make it to the doctor on a regular basis. Meanwhile, many people have to line up childcare and use up precious sick leave so they can get to treatment. Add to that the expense of transportation, because why not blow a little more cash on this disease?
Why have one chronic illness when you can have two or three or more? Sometimes one condition will actually cause another. For example, Lyme disease can cause arthritis. Other conditions often just come hand-in-hand, like depression and anxiety or fibromyalgia and chronic fatigue syndrome. (Some of us are just what I call a “bullseye person,” where things just randomly hit us even though they’re unrelated.)
Damage to Relationships
This might be the worst outstanding symptom of them all. Chronic illnesses can put a huge strain on relationships, romantic or otherwise. Not only is it difficult to understand our invisible disabilities, but people often get frustrated because they want to help and don’t know how. It’s also difficult to make plans and keep them when we could have flare-ups at any time. Plus, those of us with mental health diagnoses may not always be able to control what we say and do and unintentionally hurt those closest to us.
Everything That’s Lost
I talked about losing time, and we do. We also lose so many other things due to our illnesses. We lose friendships. We lose favorite foods. We lose favorite athletic activities. We lose sleep. We lose independence. We lose painlessness. We lose dignity. We lose our slender figures. We lose dreams. We lose our old identity.
I work every day to get better at managing my symptoms and my outstanding symptoms. The biggest thing I do in the wake of so much loss is try to find or make things to gain. I’ve gotten to be a better cook, because my dietary restrictions have made me more creative. I’ve learned to savor simple moments of self-care, like applying essential oils or holding my hands under the hot water from the spigot. I take naps. I have a fun new fitness routine. This spring, I’m going to get my bicycle back on the road, and I can’t wait. And there are all the wonderful things in life that I haven’t lost.