We’ve all been there. You wake up with a headache or a migraine, a sore throat and maybe you’re exhausted. Thankfully, it goes away in at most like a week and you’re back to your normal self… but what is it like to be chronically ill?
It’s a lot more difficult than you think.
I look like a normal human being. I’m a little heavier than I’d like to be. Sometimes I think people assume it is because of how I eat. Some of it is, I’m sure, but much of it is due to my arthritis and the swelling caused by it. And oftentimes, even when I’m feeling my worst, you wouldn’t know it by just looking at me. But if you watch me walk, you might know something is wrong.
The physical pain is nearly indescribable. It can fluctuate between a joint feeling completely frozen or being on fire. It can be pain in the joints, the nerves, the skin – or, for those of us unfortunate to handle the systemic forms of our illnesses, the organs. But I can try to put it into words.
One day you’re fine, and the next you’re ready to chop off your hands with a butcher’s knife – that is, if you could figure out how to hold one at all.
Maybe that’s somewhat of an exaggeration. Let’s try again.
Most days, I can make it through my day okay. A relatively normal amount of pain for me is ranges from a three to a five out of ten – with zero of course meaning I’m in heaven and ten meaning I’d rather be just about anywhere but in my body. Just for comparison, wisdom teeth coming in would be about a four or five, as would a small broken bone in your foot. And I deal with that level of pain on a normal basis.
On days where I can’t even get out of bed, my pain could range from a five to an eight. To be quite honest, I have nothing to compare that too that isn’t arthritis-related. Imagine your knees swelling up to twice their normal size – remembering that they’re swollen on a normal basis as it is if you’re me. Just imagine trying to move your legs, but they won’t respond – or, if they do, you feel like they’re plotting your assassination with every step. Imagine a leg so swollen that you can’t get it high enough to get into the shower/tub combo.
To be honest, I’ve had this illness so long I don’t even really know how to explain this to people who have never had to deal with it.But often, the most devastating effects we feel are the emotional ones that are just as difficult for others to see.
Even if you have a good support system, you’ll face it – isolation, that feeling that no one else in the world knows how you feel right that moment. Sure, it sounds like an emo teen’s dream. But it is very real. Dealing with the emotional and physical pain is difficult enough, but with an invisible illness the problems multiply – how do you get people to believe you when they can’t tell that you are sick?
Even more than that, how do you not treat other people with animosity? ‘Normal’ people do stupid things and take their ‘perfect’ bodies for granted. And how can you handle that when you have a bad day? How do you listen to someone complain about the WORST.PAPERCUT.EVER when you can barely get out of bed.
In all likelihood, your family and friends are going to either not believe you or they’ll try to help you with everything. Both are equally difficult to deal with. My invisible illness means that people will and do mistake me for being lazy and fat. They just can’t see that I’m in pain or even imagine how it feels. This isn’t just aching bones. This is more, so much more.
And likewise, having help with everything can be debilitating in its own way. I cherish my dignity and ability to be myself and do for myself. You need to have a strong support system, but finding that middle ground in any relationship is really difficult.
Once you get a chronic illness, you’re stuck with it, save any miracle cure that I’m sure we are years away from finding for any of them. It can be really difficult to keep your head up because you know tomorrow you might wake up and feel even worse than today. And during flare-ups and active points in the disease, it can be really hard to even imagine an end in sight.
In the end, it’s a lot about waiting – waiting to hear your diagnosis, waiting to see if your newest medication will help or if your body can tolerate the effects – some are even waiting for their joints to break down so they can just get fake ones.
Perhaps one of the most difficult things to handle is sharing what you’re going through. Obviously, for some of us this is not an issue anymore. But, as you can see from the little section about pain, there just aren’t the right words for some of what we experience.
Some of the things we have to deal with are very personal – from depression to problems with intimacy to more. And sometimes it just isn’t something to share with someone, no matter how well you know them. And often it is just about feeling like a burden. Sure, I want people in my life to know what’s going on with me, but I also don’t want to feel like I’m nagging them about how I feel or that all I do is complain about my body either.
Sometimes it can be really difficult to be in a relationship. It can definitely be stressful, which can aggravate chronic conditions. But some of us are lucky enough that we find great men and women that will help take care of us (as a side note, I kind of make my significant other edit my posts for me sometimes, and he says this ‘great men’ thing is so not true).
I find that it is really difficult to talk about how I am physically feeling sometimes, and that is why I started my blog. My boyfriend wanted to know more about what was going on with me and my disease and I didn’t feel comfortable… no, that’s not the right phrasing. I didn’t feel like I could bring it up without it being an awkward crying fest full of me repeatedly saying that I could understand if he couldn’t handle my condition and trying to break up with him for what I thought was ‘his sake’. In reality, I was afraid that when confronted with all this overwhelming information, he’d be ready to split. Or I thought it’d be easier to just distance myself. But instead, I found someone willing to listen, to try to understand, and to help when he can. We’ve been together a long time, but I must admit – I still worry about splits-ville… especially with my health being so unpredictable lately. I worry that he will find someone enough like me, but ‘normal’ – and that’s a worry that many people with chronic illnesses share.
However, studies also show that people in relationships tend to be happier and healthier. So don’t fret!
In the end, everyone has a choice when they wake up. They can choose to be happy throughout the whole day and be a Pollyanna, or they can choose to let these things get to them. I’m not perfect and I have my share of both days. But if you can consciously make the decision to be happy, it will be a huge positive effect in your health. And let’s face it, if you’re chronically ill, you can use all the help you can get.
Guest Blogger Bio
Name: Kirsten W.
Homebase: Madison, WI
Diagnosis: Juvenile Rheumatoid Arthritis