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Chronic Illness Isn't a Reason to Feel Guilty

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Let’s take a moment and talk about guilt. Specifically, the guilt of being chronically ill.

My guess is, if you struggle with chronic illness, you know exactly the type of guilt I am talking about. Maybe it started well before you were sick enough to have a diagnosis, maybe even before realizing you needed to see a doctor.

It might have started when you start noticing that there are things you used to be able to do, that now you cannot. You may wonder what changed. It may even have been part of what finally helped it click that you need to be seeking a physician’s care.  Or maybe you have a friend with a chronic illness that recognized something you were telling them as things they themselves went through, as it was for me, who said, “Honey – that’s not normal, you really need to go see a doctor about this!”

Even when taking that step, you may not fully believe it’s necessary. By this point, part of you knows. It may be a deep down part of you, that you haven’t been able to put a solid finger on. But it’s there. You keep pushing to do activities that are now hard for you. Maybe because you’ve just always done them and don’t want to acknowledge just how bad you feel when you do, or maybe out of obligation. Either way, you do them or try to do them, and each time you find you pay the price.

Is any of this familiar yet?

You see the physician, either your primary care or maybe a specialist. They talk to you for a bit, listen to your symptoms, some of which you may not even register all of as significant enough to mention at this point.

They nod, write their notes down, and then proceed to tell you:

“You just need to exercise more often.”

“Change your diet.”

“You just need to lose some weight, and you’ll feel better.”

“You’re too young to have ____.”

“I don’t think it could be ____, it’s so rare!”

“You don’t want that anyway, it’s a nasty diagnosis.”

And the big kicker….

“It’s all in your head. You are just depressed. Go see a psychologist.”

How many of us have heard these sort of statements? This disregard can come from anybody, even people we justifiably feel should have our back. Family, friends, physicians. Or all three.

It seems to be a pretty universal experience for chronic illness patients. It feels like we have all at one point or another had someone act this way towards us.

At this point, the feelings of guilt really start to take hold. Partially because these are things we may have already worried about ourselves. That feeling is confirmed and compounded every time someone dismisses our illness. And sometimes the advice may even be something that we should do.

Often diets are a factor, and can aggravate symptoms. And often something like diet is the first thing to go out the window, because let’s face it – thinking about and preparing food that is healthy for us tends to be more work…and we are tired! And yes, depression and anxiety are linked with many chronic illnesses, so many times it’s a factor. But what many don’t seem to take into account is that these things can be a symptom of, or a reaction to, being sick, rather than the cause. You might not feel as sick if you address things such as this, but you aren’t going to not have a chronic illness anymore because you suddenly picked up a healthy diet. It’s easier to blame depression and kick you out of their office, onto a different doctor, than really dig in and figure it out with you.

But what often sticks is the disregard, intentional or not, that is shown when statements like this are made. Because what is portrayed is …

“It’s your fault.”

“You are imagining things.”

“Because I cannot physically see it, I don’t believe you.”

From family it might be:

“Why are you so lazy?”

“You sleep too much.”

“You don’t have to make excuses if you don’t want to do it.”

These comments have the potential to do even more damage than a physician dismissing us. A physician only sees you for a brief period, every once in a while, whereas our families should be the ones to know us better. Each experience like this leaves an invisible mark on us. They build, feeding into that guilt, sometimes a little bit at a time and sometimes in giant leaps.

Obviously, these are just examples of how guilt can lodge itself in our minds and emotions when it comes to our illness. Everybody’s story is their own. But a common thread in chronic illnesses is that we have to fight to get people to believe us. That fight can leave us feeling like we have to justify being sick to others, or pretend that we aren’t.

It can take years to get diagnosed. Often chronic illness patients have to go through a plethora of doctors, sometimes being bounced between specialties and sometimes finding new doctors in a particular specialty after being disregarded by their current physician. We get told we are drug seekers, or accused of “doctor shopping” to find a doctor who will “fit” us into a diagnosis. Many of us have had to fight tooth and nail for the treatment we do receive. And it is exhausting, and isolating. It makes life, which is already stressful and sometimes exhausting, that much more so. After so many times of being told these things, part of us even sometimes starts to believe..Because wouldn’t it be easier, if I was just making this up and didn’t actually have this debilitating disease? Now we get to magnify the guilt that was already there.

Now let me ask you something….What good does having that guilt serve?

I cannot answer for you. But the answer for me is: None. It serves no good. All it has done for me is negatively influence decisions, add stress, and decreases the likelihood that I am going to ask for help, even when I really need it.

Yes, there are things that are appropriate to feel guilt over. Having a chronic illness is not one of those things.

I’ll be honest – I will probably always have guilt when I have to miss one of my daughter’s choir concerts, or be frustrated when I can’t make a commitment to my son to drive them to his friend’s house the following weekend, because I cannot guarantee I will feel good enough to actually do it. I will always try to find ways to minimize how my illness affects their childhoods. I recognize this as a guilt I put on myself, because as a general rule, mothers are constantly finding things to feel guilty about when it comes to raising our kids.

What I have started to come to realize through this journey is that when I run into someone who displays to me an unwillingness to listen, a lack empathy or understanding, it is not truly actually my problem, but theirs.  These comments may be made out of lack of understanding because they’ve never experienced anything like it. They might be well intentioned suggestions. They might be blatant disregard, or straight up nasty, or subtle digs.

None of these things make it your burden to bear.

I imagine we will always have these sort of encounters. Not everyone wants to understand, or thinks there’s anything to understand. Obviously they have it all figured out, and you should just exercise more! And some of those encounters will mean more to us than others. Some people will intentionally play upon that guilt we do already feel, or will be oblivious to the effect their words or actions have on us.

Recognizing it doesn’t mean that these feelings are going to vanish overnight. But it is a step.

I am extremely fortunate to have a family who, for the most part, understands. My experiences in this department have mostly been in regards to physicians, but I have also experienced situations like this in friendships. I have certainly had physicians who do listen, and friends who do understand the impact chronic illness has on my life. And it still has been a huge difficulty for a very long time, though for many years I did not recognize it as such. Guilt is a tricky thing, and can sneak up on you.

When I open up to someone about my illnesses, I am exposing a very vulnerable part of myself, whether they know it or not. How they respond is up to them, but I have finally reached a point where I have begun to recognize that it does not mean that I have to feel guilty for something I did not ask for and do not want, when they cannot or do not exhibit understanding or empathy. That’s on them.

There are a million things in life we could feel guilt over, many of them justified. Having a chronic illness is not one of them. 

Getty Image by RUBEN RAMOS

Originally published: May 2, 2018
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