Living every day with a chronic illness is not for wimps. This is a true statement whether the illness is mental or physical. An insidious evil enters your life and changes each and every day that follows.
It’s not a hopeless cause. Millions of people worldwide continue to live relatively happy and productive lives, even with their chronic illness. They are able to do so because of the four lessons that every chronic illness eventually teaches you.
1. Looks Can Be Deceiving
Mental illnesses and physical ones like Familial Mediterranean Fever, Fibromyalgia and Multiple Sclerosis, among others, typically do not present in a way that is easily identifiable from the outside. That means that the person sitting next to you, with the happy smile on their face, could be someone suffering from one of these ailments.
I happen to have been blessed with a few ailments. My greatest two rivals, Bipolar Disorder and Familial Mediterranean Fever (FMF), limit my day-to-day life more than other of the others combined.
Except for an occasional rash on the tops of my feet or lower legs, neither disease causes any outward signs. Unless you can tell from the black circles under my eyes, or by the way I am dragging myself along on the especially tough days, you likely would never know there is anything wrong with me.Bipolar Disorder Symptom Checklist
The positive lesson here, and I do believe that everything that happens can teach us something positive, is that this knowledge has changed the way I look at people. That involves more than just viewing people with illnesses differently.
The person laughing the loudest may be the saddest. Someone who surrounds themselves with crowds of people may be the loneliest. The girl sitting quietly in the corner may be the funniest.
The only way to truly know someone is to take the time and effort to get beyond the surface. Almost everyone is worth this effort.
Personally, I work very hard not to appear sick. It’s very frustrating to me when I feel like my whole identity is my illness. So, I strive the keep a smile on my face, to complain as little as possible and to steer conversations towards the positive as often as possible.
2. Flexibility Is Essential
Many chronic illnesses create an abundance of uncertainty in the patient’s life. Someone who is feeling fine today may not be able to get out of bed tomorrow. Heck, the person leading the team in the morning may be incapable of movement come afternoon.
This uncertainty hopefully leads you to be flexible. I say “hopefully” because I know more than a few who try to stick to their prearranged plans no matter what.
Typically, people that are newly diagnosed tend to fall into the inflexible category. The reason why is that flexibility involves some acceptance of the diagnosis, and that acceptance may take months or years to achieve.
Learning to accept that you have an illness and that thereby you have little control over tomorrow, teaches you to be flexible. You may still get to go for a hike, but it may have to be a shorter one. Dinner may still be an option, but you’ll have to forego the movie that was to follow. And going out late for a few drinks? Well, unfortunately, some things may not be possible. By being flexible, many things will be.
3. Success Involves Planning
It may seem contradictory for me to follow up talk of uncertainty with planning. I just said that you can’t plan ahead, didn’t I?
Yes and no.
While it is true that often you have little to no control over when a flare or attack will start, time does teach you that there are things you can do to improve the odds.
Whether it’s the result of FMF or just another ailment I’ve been blessed with, I also live every day with gastroparesis. Mine is not always consistent and not as severe as other people I know. But, it is always there.
Hard learned lessons have taught me that I cannot eat meat or other hard-to-digest foods before going places. If I do, more than likely I will end up too sick to go anywhere.
This knowledge has led me to change what and how much I eat depending on what I have planned. For instance, I go to a Bible study one night during the week. To give myself the best chance of attending, that entire day before I either don’t eat or only have liquids like smoothies. That may sound a little extreme, but more often than not it works.
The hard thing is when I have to go somewhere more than one day in a row. Skipping meals one day is not terribly difficult. Multiple days without eating brings on a whole slew of additional problems. With proper planning, many times I can do it.
If you have a chronic illness, take note of patterns with your symptoms. What activities are generally harmless and which ones lead to increased symptoms? Use those patterns to help you plan ahead.
4. Bargains Are for More Than Shopping
One of the best blog posts I have ever read about having a chronic illness is by Christine Miserandino over at ButYouDontLookSick.com. Her article, The Spoon Theory, gives an excellent and relatable portrayal of what it’s really like.
She compares the limited amount of energy you have with an illness to having a limited number of spoons. (Read her post and the analogy will make more sense.) Each and every activity is only possible by spending or giving up a spoon, and there are only so many spoons available each day.
Sure, just like with credit cards, sometimes you can overspend and use up more spoons than you have. But that means that tomorrow or the next day you will start the day with that many fewer spoons.
Chronic illness becomes a great equalizer in that sense. Overdo today, pay the price tomorrow.
For me, this means bargaining over which things are most important to me. I can mow my lawn today OR I can go to Bible Study tomorrow. Tonight I can go out with friends OR tomorrow I can work. Sometimes it feels like Sophie’s Choice, but learning to bargain can make life more enjoyable.
Unfortunately, as most illnesses progress, the number of spoons you are given each day tends to decrease. That may make the difference between spending today shopping OR spending the next two days in bed.
You may not be able to do everything, but by bargaining carefully, you should be able to do many things.
It’s Not Hopeless
Reading back through what I have written so far, it sounds a bit on the negative side. That’s probably because two days ago I pushed myself to finish a project because of limited time constraints, and yesterday and today I am paying for it. I spent too many spoons and have none left for today.
Learning these lessons quickly will help you to be able to continue living as a full a life as possible moving forward. Yes, it sucks to have to say “no” to dinner plans because there is someplace you have to go tomorrow. And it hurts to stay home from a party because you know that is the only way you can make it to your job tomorrow.
Try not to focus on what you are missing. Instead, each time you plan, bargain or flex successfully, celebrate the victory. A full life is possible, even with a chronic illness. The secret is to be strategic with the energy that you do have each day.
Until next time, keep fighting.