To Those of Us With Chronic Illness Who Say 'I'm OK' When We're Not

How are you today?

OK? All right? Fine?

But what if you’re not OK today? Would you feel as comfortable replying to that question with “Actually, I’m pretty down today, I had a terrible night’s sleep filled with pain and I’m on the verge of tears?” Probably not.

I’m guilty of simply replying “all right” every time I’m asked how I am. On a day with good mobility, minimal pain and with a high level of energy? I’m all right, thanks! On a day when I can’t walk very well because of my psoriatic arthritis and my ankle has become so swollen so quickly I’ve had to cut the bottom off my trouser leg so that it fits? I’m all right, thanks!

Those of us with chronic illness often think we must be strong all the time, that we need to show the world a brave face, to make people believe that everything is OK with us. It’s easier that way. It saves us from having to answer questions about what is wrong with us. It saves us from having to explain for the 100th time what we’ve been diagnosed with. It saves us the blank stares from people who don’t quite understand what’s wrong with us and who think fatigue is the same as being tired from a lack of sleep. Saying we’re OK is the easy option. But it’s exhausting having to keep up the act. We’re all exhausted enough as it is without having to pretend that everything is OK.

Here’s the thing. It is OK to not be OK all the time.

I shouldn’t feel guilty for hurting and for being in pain. I shouldn’t feel guilty for feeling a little bit low sometimes. I shouldn’t expect to be OK all time. And neither should you.

There is no shame in admitting that things are hard. There is no shame in asking for help. There is no shame in not managing to go somewhere or managing to do something. It’s even OK to sometimes feel that life is falling apart. A chronic illness is life changing. It took me a very long time to come to terms with this, and truthfully, it’s still a battle. For every one good day I might have where I feel super happy and confident about my life and my future, I have two other days where life feels a struggle and I am fearful for where my life and my body might be heading. But it’s OK to feel like that.

I have also developed what I like to call “chronic illness anxiety.” It’s a condition I have totally made up but one that I’m sure lots of us can relate to. It’s the anxiety caused when thinking about how your chronic illness will impact upon a certain activity or social situation. Before my diagnosis I wasn’t a particularly anxious person. Sure, I had the odd worry like everyone else, but I enjoyed a generally anxiety free life. Now? I have chronic illness anxiety, caused by my arthritis most days, especially on bad days or during a flare. It’s often the first thing I think of in the morning and the last thing I think of at night. From trying to work out how many hours I can manage at work based on how good a sleep I managed the night before, to trying to establish if I should go out with friends on medication day or if I’m better off staying at home to rest up and sleep it off. Everything seems to worry me.

But it’s also OK to feel overwhelmed by it all. I have two diaries. One for general day to day activities and one purely to keep on top of my medical appointments. I don’t know if I’m coming or going most days. Blood tests. Consultant appointments. Physiotherapy. Podiatry. Doctor’s appointment. More blood tests. Not to mention trying to keep on top of taking all my numerous medications at the correct dosages. But it’s OK if it takes a while to get your head around everything that is going on. It’s OK if things seem overwhelming. It’s OK to have the odd worry here and there.

On my down days, I often wonder why I occasionally feel as low as I do. I feel guilty for not feeling OK and for feeling a little bit sorry for myself. I forget that I am OK to feel like this sometimes. My body has drastically changed and with it, my entire life. I like to think of these low moments as “situational sadness.” I feel this way because of what is happening to my body and what it is putting my mind through. I feel this way because one year since I developed arthritis, I’m still trying to come to terms with my new body and my new life. I am sad and a little bit low sometimes because of the situation that I find myself in right now. I don’t know for how long I’ll feel like this, but what I do know is that it’s OK to feel this way. It won’t last forever. I will be OK.

So, the next time I’m asked how I am, I’m still going to reply “I’m all right,” because I am. I’m all right. And so are you.

Thinkstock photo by fcscafeine