Life with a chronic illness comes with a wide variety of physical symptoms that can make our day-to-day life quite a challenge. Unfortunately, our actual illness is only one piece of life with a chronic illness. With it often comes many other things, including loss of friendships, a strain on relationships, financial hardships, and many lifestyle adjustments, to say the least. There’s something in particular that I want to talk about today though because it happens a lot, especially to those of us with “invisible,” rare, or often misunderstood illnesses. And that is the questioning, judgment, and comments that others either unintentionally, unknowingly, or simply unkindly say to us.
We undoubtedly live in a society where judgment and criticism are quite prevalent. I don’t think there’s anyone that hasn’t had at least a good handful (or more!) of unkind digs come their way. What I am talking about today though is something a bit different, something that unfortunately happens quite often to those of us with a chronic illness. And that is comments, suggestions, judgments, and questioning directed at us related to our illness – the validity of them, how we live our life because of them, and even what they feel the “miracle cure” for us is.
Here's a few to give you a flavor of the types of expressions I’m talking about:
“You can’t be that sick, you look fine.”
“Yea.. I’m tired too. I didn’t sleep at all last night.”
“I know how you feel, this cold has really hit me hard.”
“I’d love to stay home all day; you are so lucky!”
“Drink more water! That will perk you up.”
“You just need to push past it.”
“If you get up, you will feel better. Laying around all day isn’t going to help”
“Have you tried taking more vitamin C? I’m sure that would help”
“You’re just being lazy.”
“Come on, it can’t be that bad”
“I can’t believe you canceled again. You used the ‘sick’ excuse last time”
I’ve had comments such as these thrown my way several times and honestly, I still find myself stunned that someone would say these things to someone already going through so much. So much that I often don’t respond how I wish I would have (or perhaps, at times, it’s good I didn’t!).
So why does this often hit us so hard? I think it’s because we are leveraging unbridled strength and courage each and every day to stay in the game. To be there for ourselves, those in our lives, and to contribute as much as we can. We are giving it our all, right down to our very core. So, when someone questions our abilities or the validity of our illness, it’s often like a slap in the face.
So, what do we do? The way I see it, we have a host of options. Here’s a few…
Decline to Respond
We can simply choose not to respond and, of course, that is perfectly acceptable. Whether it’s because don’t owe this person an explanation, that our medical conditions are our own private matter, that we are simply too tired to explain or the comment is not worth our time and effort – whatever the reason, we can choose not to respond. I’ve done this often myself. Sometimes with regret – sometimes I feel should defend myself more. I walk away kicking myself for not sticking up for myself. Or, sometimes I miss my “moment” because of brain fog, because I’m just so shocked by the statement, or I just don’t have the energy to care enough. Other times though, I’ve been glad I didn’t. I probably would have said too much and in not a very nice way. As part of the “declining to respond” bucket, we can also simply blow off the comment completely (though that can be easier said than done at times!).
Perhaps the expression was entirely innocent; the person simply doesn’t have an accurate understanding of what life with a chronic illness is like. Honestly, some days I don’t either. It changes daily on me! In these cases, especially if it comes from a friend or loved one, perhaps sitting down and sharing more what’s going on is something that in the end may be most beneficial for the relationship. These comments also sometimes come from mere acquaintances or even strangers. So, what do we do then? Do we share and hope that we’ve helped create a greater understanding with a member of society that will show more compassion and understanding with us and others going forward? Or do we simply walk away – it’s not worth our time or energy and it’s none of their business?
Set Them Straight
This sounds harsh, but I mean it more so as being very direct. There are some people in our life that we spend a lot of time with, they see our challenges, and they still don’t “get it.” For example, we may have already told our loved one five times that our level of exhaustion isn’t the same as a “bad night’s sleep” for them. And they still don’t get it. So maybe it takes a creative analogy to resonate with them, a day in the life story, or a heart-to-heart talk about the impact of their comments. Sometimes I remind myself how clueless I was before I got sick about what life with a chronic illness truly was like. Yes, I listened, I supported, and I cared for others with an illness. But that still is not the same as having a chronic illness yourself; you don’t know, until you know... And then there’s others that you can talk or show them what your life is like until you are blue in the face and they simply will never get it or don’t even try to get it. These are the most challenging ones, especially if they are part of a key relationship in our life. The comments often mean more and the lack of understanding digs deeper.
I don’t have all the answers here. I think the response we choose to give is so very personal to each one of us and to every individual situation. These are just some of the thoughts that have run through my mind when it’s happened to me. I think what’s most important is we need to keep focusing on ourselves and our own needs and self-care. Yes, these comments may infuriate us, hurt us, and make us cry at times and sometimes we just have to let ourselves process those feelings and figure out what it means on the whole to us. At times it may mean assuming positive intent. Other times it may mean moving quickly past it or even the relationship. Only we can decide what route to take and when.
I do think it’s a shame that this is such a prevalent experience among us. We have so much on our plates already; we don’t need more. Knowing that this often seems to come part and parcel with a chronic illness though, it makes me so proud of every single one of us. That we are that resilient and strong that we can deal with our illnesses – and all the rest that comes with it.
There are many advocates and educators within our community and beyond that are working hard to change the stigma and the misconceptions that are out there. I have much hope that we can change the world a little bit each day. I have hope too that the stigmas, the comments, the judgments – all of it – will eventually, in time, evolve into a more supportive environment for us all to live in. Many of us already are part of the change, showing and sharing what life with a chronic illness is really like. Moments like this... they have a ripple effect.