How To Deal With Your 'Invisible' Illness

Today's post from psychologytoday.com (see link below) is an article by well-known chronic pain commentator, Toni Bernhard and discusses the stresses brought about by having chronic but largely 'invisible' illnesses. Now as you all know, neuropathy is mostly just such a disease where the chronic pain goes on behind a sort of mask of physical well-being. You might look tired and worn down by the symptoms but essentially, you look as healthy as the next person. Many of her articles can verge on the 'cloying' and say all the things you're supposed to say, as positively as possible - you have to be in the mood for them - but this one pretty much nails it. Having a so-called invisible illness, causes all sorts of mental problems for the sufferer and you learn to read the looks in people's eyes that say: but you don't look ill! This article is very helpful in putting all that in perspective - worth a read.

The Burdens Posed by Invisible Physical and Mental Illnesses
Toni Bernhard J.D. Turning Straw Into Gold Posted Dec 12, 2017
Four extra burdens faced by people with invisible physical and mental illnesses.

I look healthy. My friend, whom I’ll call Gail, also looks healthy. The difference is that I suffer from a physical illness and she suffers from a mental illness: depression. The similarity is that both of our conditions are invisible to others.

Despite the different source of our illnesses, our lives are parallel in several ways. I want badly to be able to go places and to socialize, especially at night when visiting with others is often at its richest. But I can’t. My body’s limitations keep me housebound. And Gail? Her body doesn’t keep her from these activities, but her emotional state does. She finds it hard to leave the house. She finds it hard to socialize. Some days, she wants to curl in a ball and stay in bed. I do that too, but for a different reason.

The fact that both of our conditions are invisible to everyone but those we’re closest too imposes many of the same burdens on us. This piece will discuss four of them. 

1. How to manage others’ expectations…and how much to share with them.

This can be a major problem during the holidays and at family gatherings. We may be suffering terribly, even though we look fine. As a result, people may expect us to pitch in more and be more social, but it’s not healthy for us to put ourselves in a situation where we’re forced to do things that make us feel worse physically or emotionally.

Many people who are depressed are high-functioning. That’s why their struggles are invisible to others and why they get criticized for not being “in the holiday spirit,” even though the thought of the holidays and all they entail can exacerbate their depression.

How do we manage these expectations? How much do we share about our struggles? The obvious answer is to be honest with people. But if we’re depressed, we may not want to share our inner struggles with others, even those we’re closest to. And if we’re physically sick or in pain, we may be concerned that others don’t want to hear about our symptoms, especially during a time when everyone is supposed to be joyous.

This dilemma is present for me whenever I’m with others. On the one hand, I want them to understand why I’m so limited in what I can do. On the other hand, I don’t want to impose my health problems on them if they haven’t shown an interest, partly because it might trigger their own fears about illness. Having to make split-second decisions on how much to share adds to the burden of being chronically ill because it’s physically and mentally exhausting.

2. How to look when we're around others.

If we take the time to make sure we look good around friends and family, they may assume we’re “game” to do anything when, in fact, we’re either too sick or too anxious or depressed to do much at all. And yet, not trying to look our best when we’re around others can be bad for our morale.

I face this dilemma of how to look around others every time I go out. In 2010, when my book How to Be Sick was released, I remember the “back and forth” that went on in my mind as I was getting ready to go to an event at our local bookstore. I thought: “If I put on rouge and lipstick to cover up how pale and drawn my face looks, people might think that the author of How to Be Sick isn’t sick. But there will be so many people there whom I haven’t seen for a long time, and it will make me feel good to look good for them.”

This inner dialogue may sound trivial, but at the time it was terribly stressful for me. In the end, I compromised and put on some lipstick.

When we try to look our best, we also face the dilemma of how to field comments about how good we look. When people say to us “You look great!” it’s hard to respond gracefully if we’re suffering physically or emotionally. If we say, “Well, I don’t feel great,” we sound hostile or at least ungrateful for the compliment. I’ve settled on saying “Thank you” and changing the subject. 

3. What to do when people don’t believe we’re suffering mentally or physically.

This can be a tremendous burden, especially for those who are in their 20s and 30s. People say to them “You’re too young to be in pain” or “You’re too young to be depressed; life is beautiful.” But physical and mental illness can become our constant companion at any age.

When I first became chronically ill in 2001, I worried all the time about whether people believed that I was sick. I was afraid they thought I was lazy or a malingerer.

As the years have gone by, I’ve come to care less and less about whether people believe me; this has been very beneficial for me. Spending hours worrying and fretting about whether others understand how sick I am uses up what precious little energy I have and can even exacerbate my symptoms.

Now I look upon others’ lack of understanding as being about them not me. Illness—mental or physical—may trigger fear about their own state of well-being, and this can lead them to refuse to believe what we’re telling them. I also remind myself that I can’t control what other people think. None of us can force others to behave the way we want them to. It’s better for our peace of mind to accept that some people will understand and some will not. We know the truth about ourselves; that should be enough. 

4. How to manage self-criticism.

I’ve learned from the hundreds of people who’ve written to me that, when their health struggles are invisible, they’re more likely to blame themselves for not being “normal.” They may even question whether they’re really ill. It doesn’t help that we live in a culture that bombards us with advertisements and “TV experts” telling us that everyone can be healthy and fit both physically and mentally if they just do this or do that. But more often than not, the state of our mental or physical health is not something we control.

The most important thing we can do is to become our own unconditional allies. It’s not our fault that we’re sick. It’s not our fault that we’re in pain—emotionally or physically. It can happen to anyone. It’s one of the risks of being alive.

The antidote to self-criticism is self-compassion. Did our body choose to be sick or in pain? No! Did we choose to be depressed? No! Once we truly realize this, we can begin to treat ourselves with care and kindness—the way we’d treat a loved one who came to us and asked for support in a moment of need.

I recommend that you speak kindly to yourself, using words that are specific to your situation: “It’s sad that I have to miss the holiday party due to illness”; “It’s hard to have to force myself to go out and meet people when I’m so depressed that I just want to crawl into a corner and be left alone.”

As you speak these words, you might stroke your face gently with your hand or stroke one arm with the hand of the other. I find that this physical touching softens my heart and makes negative self-judgment fade away. Then I go on with my day as best I can. (For more on handling self-criticism, see my piece “A Sure-Fire Way to Silence Your Inner Critic.”)

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Invisibility seems to be the hardest burden that many of us with mental or physical illness have to carry. I say this based on the people who’ve written to me about their health struggles. Please remind yourself that it’s not your fault that you’re struggling with your health.

Kermit the Frog sings “It’s not easy being green.” Well, it’s often not easy being human. That’s why our number one priority should be to treat ourselves kindly. My best to everyone during the holidays.

© 2017 Toni Bernhard. Thank you for reading my work. You might also find these helpful: “The 9 Most Frustrating Things About Being Chronically Ill” and “Surviving the Holidays When You’re Chronically Ill.”

https://www.psychologytoday.com/blog/turning-straw-gold/201712/the-burdens-posed-invisible-physical-and-mental-illnesses