It’s normal to talk about the side effects that everyone can see, but what about the side effects that aren’t seen? The ones nobody dare ask because they are afraid of the answer (and then wish they hadn’t asked the question).
Chronic pain is an invisible illness and this means hidden side effects.
Firstly, and sometimes obviously, is weight gain and loss. I’ve not met or spoken to one person with a chronic illness who’s happy with their weight. Let’s face it, few people are really happy with their weight, but having all these medications just to be able to survive one day takes a toll on your weight. Be it steroids, nerve pain drugs or even opioids, prolonged use can have a big effect. But because of our illness, exercise may barely exist, because let’s face it, if you can get out of bed one morning you’ve basically just climbed Everest. Enough said. But it’s a constant battle with medication and exercise, and certainly not a battle any of us are choosing to fight.
Mood. Mood swings are a given, for any human being, it’s what we do as human beings, but add in severe and debilitating pain and medication, and it’s like a ticking time bomb. Everyone has off days, but when your are in so much pain, the slightest thing can make you explode, and for no apparent reason. Certain medications I have taken in the past have made me rage at times, and not having control of your mood is scary. You can almost see it happen — this switch inside you clicks and boom, look out! But in the next breath, you can be so delightfully happy, almost delirious, you forget about the bad moods, until that switch goes “click.”
Patience. Given that most of your time is spent waiting on doctors, surgeons, and everyone else, you’d think patience was a given. No. I have less patience now than I ever did, but not in everything I do. I have less patience for faffing around, being downright rude, general BS and stress. Stress being the main factor of pain in my body, I try to avoid it at all costs – which in itself can be stressful (go figure!). Of course it doesn’t always work, and I will get myself worked up which then causes a massive crash, but I’m learning to deal with things a lot better. But if we all had a little more patience with someone we know who has an illness, the benefit to that person is better than any gift.
Mental Health. Of course, this is a big side effect and one that’s very easily hidden. Be mindful of the fact that that person has gone from being a healthy person, to having their life changed in an instant. It’s not an easy process, it never will be, you grieve every day for the person you once were, but how do you deal with the fact that that person has gone, and probably forever? Is it any wonder depression is a major side effect? Anxiety also comes in to play here, because not knowing how to deal with this “new” life is extremely new territory, and terrifying. Is it any wonder people can be anxious?
Lifestyle. What was once perhaps a carefree life where you did as you pleased has now resulted in a carefully managed routine, and is such a shock to the system. Imagine having a successful career and a happy/comfortable life (as comfortable as it can be!) and then all of a sudden you become chronically ill, not able to work or provide for your family, let alone yourself. Not able to function without help, or do the things you used to. All that taken away in the blink of an eye. The lifestyle you once had has been swapped for something that you struggle to control, let alone get used to.
Skin/Hair, etc. Now of course you can see skin (not all skin of course) and hair, nails, etc., but through medication, tiredness, and other factors, our skin and hair can take a beating, too. My skin has changed from relatively normal to extremely uber sensitive. If something even brushes past my skin, I have a reaction. My face is now full of spots, which come for a couple weeks holidays, then disappear, then re-visit like never before. Reactions to medications can cause terrible skin problems. Hair can also fall out at a quicker rate than it grows.
Intimacy. Not everything is about sex if you are in a relationship. There are of course plenty of other ways to be affectionate and loving with your partner. But what if having sex is painful and hurts you — should that put you off ever having sex again? Should people who have chronic pain/illness never have sex again? I don’t think so; just because we are in pain doesn’t mean we don’t have the same needs like any other person. It’s all about adapting and finding what works, and what doesn’t aggravate pain levels. Just have fun experimenting!
Finance. I’m broke, like all the time. The never-ending medications, the lotions and potions, treatments, travel to and from appointments, everything adds up. And if you can’t work it’s even harder. It’s a gift that will take pressure off. It’s very hard for me to admit I need help financially. I do not like asking anyone for money or help, but that’s something I need to work on — my own pride. Worrying about money only adds to stress, and stress makes things worse.
There are so many side effects — side effects that seem to be taboo. But why? None of the above points need to be hidden or not spoken about! To those who have a loved one with a chronic illness, all it takes is a friendly and supportive ear to be there for a person, and have some degree of understanding what that person has to deal with.
Look beyond what you can see, and search for what you can’t.
This blog was originally published on Chronically Composed: A Scottish Journey With Chronic Pain.