IF you have a chronic illness like me, you’ll know that one of the most common things people say is “stay positive” or “keep smiling”. This is intended to help, most people are trying to lift your spirits with comments like this, but as many of you will know, it sometimes does the opposite.
I have been dealing with chronic illness for over 10 years now, and I’ve heard just about every cliche in the book. I often have well meaning but misguided advice from people who actually know very little about me or the situation that I’m in and although this is intended as a nice thing, it can become irritating and sometimes demoralising.
For a long time I have struggled with the feeling that I’m failing if I show signs that things aren’t completely rosey, partly driven by the constant stream of people telling me to keep my chin up and stay strong. I’m often told just to keep going and not to worry about anything, to just power through and not let anything get to me. I have often wondered what would happen if I didn’t, what if I sat in bed and cried for a day or if I refused to pretend to be ok when people ask how I’m doing. Well, the truth is, nothing would happen. The world wouldn’t fall down and life wouldn’t stop. In fact, I may even feel better after a day of allowing myself to wallow.
Where’s my point in all this? Well, I have this amazing piece of news – Its ok not to be ok! Yep, you read that right, you don’t have to be some sort of emotionless robot to survive a chronic illness. In fact, its quite the opposite. Having a chronic illness is stressful, it involves a constant stream of appointments, tests, treatments and sometimes life changing decisions. You’re often in high levels of pain, tired or having to deal with the long list of medications and side effects and that’s bound to cause anyone to feel overwhelmed at times. After years of repressing my emotions and acting like nothing ever gets to me I have learnt that it doesn’t do anyone any favours to deny how you really feel. It can be incredibly difficult dealing with constant illness and set backs, especially if people around you don’t really understand what you’re going through.
I’ve noticed a trend of late where people compare me to famous people with illness or disability, I’ve had an alarming amount of complete strangers tell me that if a disabled athlete can run a marathon or climb Everest then so can I. This is frankly a rather absurd way of looking at things. It’s essentially the same as me saying to a healthy person that they should be able to run like Usain Bolt. Disabled athletes/ people who over come terrible illness are amazing and extraordinary, but that’s exactly the point, they are extraordinary because they do things that other people can’t, if everyone was able to do what they do then they wouldn’t be special. I really feel its important for those around us to realise that the smallest things can become huge tasks for us and that sometimes we just need to have a good vent or cry and let things out.
Now, I’m not for one moment suggesting that we all go into a constant state of grief or never smile again, and I’m not saying we shouldn’t try to focus on the good things in our lives as much as possible, but I am saying that we don’t have to hide it when we’re struggling or feeling over whelmed. It’s perfectly normal and even healthy to be scared, unsure or upset when bad things happen. No one can go through life being 100% happy 100% of the time, so its absurd to suggest that people who are dealing with illness or disability will always look at the world in a positive light. There is nothing wrong with reaching out to a loved one and telling them you’re struggling with the pain or feeling deflated by recent bad news, or even if you’re just plain old fed up. You don’t have to constantly make others feel better by acting like there’s nothing wrong and you shouldn’t be expected to never be affected by what’s happening in your life. It’s perfectly OK to have a cry sometimes, it’s normal to struggle and not know what to do or know how to handle certain situations. It’s OK if you need to lean on the people in your life.
Of course, if you’re finding that you’re consistently struggling and not finding any enjoyment in things that usually makes you happy then it may be time to talk to a doctor for some advice as depression is pretty common in people with chronic illnesses and will hit most of us at some time or another, but provided that you’re able to pick yourself back up after a day or so and you can still see the good things that are happening then there’s no reason to be concerned or hide away.
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