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Helping Others Understand ‘Invisible’ Illness: What’s Enough But Not too Much?

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Deborah Barrett, PhD, is a clinical associate professor in the School of Social Work at the University of North Carolina at Chapel Hill who has dealt with "pain's cruel whims" since 1994. Her new book – Paintracking: Your Personal Guide to Living Well With Chronic Pain – “is the book I wish someone had handed me when I first encountered mysterious, overwhelming pain.”


Nobody Understands (when your illness is 'invisible')

The other day, during a casual conversation, a friend told how she had explained my condition (fibromyalgia) to someone else:

You know, when you work yourself really hard, so that you feel totally exhausted, and you ache from top to bottom so badly that you cannot even get up? Well that's how Debbie feels. Only it does not go away.

I was floored. I felt tears flooding my eyes. But why? I wondered. Well, because I was understood.

My friend showed me that she knew what I was experiencing, how I go about my day. If she were an anthropologist, she should feel successful because she managed a deep understanding of the "native's experience."

Later, I thought about my friend's simple explanation of fibromyalgia. Why was it so meaningful to me that someone understood how I feel?

At the same time, however, I felt a little strange about it. As if my friend had peered into the otherwise personal and private relationship between me and my pain. I pondered my mixed emotional reaction.

I began to ask people with similar "invisible" conditions about their desire to be understood. The answers were mainly practical:

• If we were understood, they explained, we would not have such a difficult time being excused from certain activities. Friends would understand why we were saying "no," and not push us. They would accommodate us, or give us a break when we need it.

• The same goes for family, and even co-workers when possible.

• In addition, being understood is important because it can restore self esteem when we are not able to finish (or even start) the projects we take on. Being "ill" is preferable to being thought of as "lazy," "hypochondriacal," or a "whiner."

• Finally, being understood, particularly by someone who shares our experience, creates a feeling of camaraderie. You do not have to explain in any detail to produce an accurate picture or evoke an appropriate response. To be understood is to be validated.

What It Means to Be "Understood"

Many of us often think with dismay that "nobody knows what we are going through." This is probably correct.

The casual observer is unlikely to perceive the depth of our pain or fatigue through our behavior or appearance. And our friends, try as they may, often feel confused by our seemingly strange array of complaints. Our presentation communicates the double message of "invisible illness" – that we can look perfectly fine, but feel absolutely crummy.

A few friends of mine with invisible illnesses, however, prefer the secrecy.

They would rather appear like everyone else and lick their wounds later, in private. They have weighed the cost of added physical discomfort against the biases they imagine people may have against them, their abilities, their attractiveness, and even their value as a person, and decided to "bite the bullet."

For them, understanding appears threatening, unless reserved for their most intimate circle.

As such, understanding represents a two-edged sword.

Let's think about it. If someone really knew what you were experiencing, say, right now, how might that person feel or react? How do you feel when you know someone is suffering?

• Knowing the extent of our difficulties may frighten others, depending on their own life experiences and how close they are to us.

• Those closest to us, and particularly the more nurturing, may become overprotective. They may wait on us hand and foot, as though we are unable to do anything for ourselves.

• At the same time, our social invitations may dwindle as "understanding" friends protect us from overtaxing activities.

• And although there are laws against discrimination, it is not difficult to imagine coworkers and bosses changing their opinion about the type or amount of work suitable for people like us (even if we had been successfully doing it!). Such "understanding" could affect our ability to find and keep manageable employment.

It therefore seems to me that understanding, like many things, is something that we want when it is convenient for us, but that we would like to withhold when it works against us.

Rather than providing full information with a vivid stamp on our forehead (or something less abstract such as a wheelchair), we may prefer to disclose information about our condition as we feel comfortable to do so. We could offer limited, person-specific understandings rather than a fuller picture of our situation. After all, wouldn't we prefer to be invited to take part in the activities of life (and sometimes have to say no, or leave early) than to be not invited at all?

On days when we feel better or have the gumption to push, we will want to join in! It is better that this remains up to us.

What does it really mean to understand someone else's experience anyway? Let's take a look around ourselves.

What is going on with our friends, our family, our colleagues? Can you really understand what your neighbor going through a difficult divorce feels? What about your friend with an eating disorder? You may not even be aware of it, or the extent to which it governs her days.

What about the couple you know who have been desperately trying to have children, who are now participating in the impersonal, drawn-out gamble with science in hopes of conceiving? What about friends who have lost a spouse, a parent, or even a child? Can most of us say we understand?

More likely we are guilty of avoiding someone in one of these situations because we do not know what to say or how to act.

We probably feel badly for them, and the thought of facing their problems makes us feel more uncomfortable.

I am not pointing this out to say that we are self-centered buffoons for wanting understanding, while we ourselves are unable to understand others' life experiences. Rather, I would like to suggest that:

1. Understanding another person's experience is something rare, and

2. That sort of understanding may not be crucial to being a good friend.

Unless you are going through a similar experience (and sometimes even if you are), deep understanding of someone else's experience is difficult to achieve.

However, I also argue, it is not necessary to have first-hand knowledge of what it is like to have lost a child, for example, to be a good, supportive or loving friend to someone who has.

But think how much easier it would be if your friend provided guidelines about:

• What helps the most,

• And the areas that are most sensitive.

Well, by knowing yourself and accepting your current needs, this is precisely the sort of information you can provide for your friends, to make their job as friends easier.

Self-Understanding Is Key

So rather than longing for understanding from others, the critical thing may be to understand yourself and be able to communicate that picture to others.

How people will treat you is largely up to you – and your behavior. The more you are able to recognize your own capabilities and limits, know your preferences, and are familiar with your audience, the better able you will be to do this.

Recognizing your own capabilities and limits helps communicate to others enough to receive an understanding response.

While it is likely that your abilities will slowly increase as you find ways to pace and adapt, it helps to know what you are able to do right now. When unable to finish something as planned, we may feel the hopelessness that often comes from struggling with chronic illness.

But healthy friends also complain about their own slowness.

"That's not the same thing!" you protest. And I agree, in many ways it is not, and certainly not to us. But keep in mind that most people have competing demands and often say "no" for all sorts of reasons.

This sometimes gets blurred by people with chronic illness who are so eager to be able to say yes. Your "no" or "not yet" is not viewed as harshly as you probably view it yourself.

Knowing your preferences makes it easier for everyone involved. The best way, I have found, to figure out how various factors affect you is to keep careful notes.

Create a simple worksheet to record the most important variables of each day and measures of your experience.

As you become well informed about the effects of say, noise, light, temperature, activities, movement, and lack of movement, you are in a much better position to keep yourself feeling better.

The less control you have over your environment, the less you can affect these things. But at least you can plan your day. If, for example, you know the supermarket is always too cold and bright – wear extra clothes and always have a pair of sunglasses handy.

Plan Ahead

Know your audience enough to see what they need to know.

While you would not call ahead and ask your grocer to darken or heat the market, you certainly can ask a worker to help load groceries in your car. If you do not want to offer a long explanation, tell him you suffer from arthritis, a well known and thus more acceptable condition.

As for friends, it is up to you how much you wish to reveal.

For those you are the closest to, you could offer written material (there is now so much out there!). Start with something short, like a pamphlet. You may be surprised how much close friends and family members may want to read about your condition. This not only provides background on your condition, but has the legitimacy of science behind it.

Otherwise, it is up to you how (or if) you want to explain your own experience. You may tell friends that you suffer from pain and fatigue, and that while the symptoms fluctuate, your overall condition will not deteriorate. See how they react.

If they seem interested in helping, you could explain what types of things affect you most, and the simple things your friends can do to make your life much easier (such as opening heavy doors, lifting or carrying heavy objects). Most friends will be happy to do the simple things that can make a huge difference to your well-being.

It is more complicated with co-workers and casual acquaintances, with whom you may not want to share intimate details of your life. But you do not have to. Reveal information only when it becomes relevant.

• If you are lacking a good chair: you can explain that you have back trouble and need a supportive chair. It is not necessary to explain fibromyalgia to everyone.

• If a line is too long for you to withstand, you could ask for a supervisor and explain that you have a neuromuscular pain condition and need special consideration.

Select an explanation that fits the situation.

• Try to figure what you can comfortably ask of people.

• Always keep your requests simple,

• And show lots of appreciation for any effort taken on your behalf.

Applying this at work may be the most difficult, where deadlines are likely to be less flexible.

Of course jobs vary significantly in this regard. It is your call whether you want to share your disability with your employers. But either way, your boss or clients do not need to learn the details of your disability – but just enough to accommodate you.

You will have to engage in a careful balancing act between trying to achieve the work environment you need and not putting off people with fears that you are unable to do the job.

This makes knowing your abilities crucial.

If you have a clear idea of what it would take for you to do a job, and what you may need in the form of special considerations, you can be straightforward. Not apologetic. Not demanding.

In most situations where you need special assistance (helpful gadgets, rest breaks), your employer is legally obliged to accommodate you. When you are comfortable with your own needs, it becomes much easier to communicate them, and without self pity or bad feeling.

Applying this in social situations should be much easier.

After all, social engagements are supposed to be fun! While this sounds like an obvious statement, how many times are we exhausted by spending time with our friends? To some extent, this is inevitable. But we can play a hand in reducing the stress of interaction, and increasing our pleasure and enjoyment.

Because we have limited energy, the first step is prioritizing: Select the engagements you want most to attend and decline those that are less important.

For those you will attend, think about what would make it easier for you?

• First, what can you do to make yourself most comfortable? (My bag of tricks always includes ear plugs, a heat sack and extra medications).

• Second, if you are going to an event with others, what would you like them to know? It may help, for example, to check whether the driver would mind leaving somewhat early.

• Third, what can the host or hostess do to increase your comfort? Call ahead and find out enough about the environment to help you prepare. Then, if there is something that would make a significant difference, explain it simply. For example: ask, "if I am feeling bad, would it be all right if I go into another room for a few minutes to lie down?" Creative backup plans can help you feel more comfortable about participating.

Remember, everyone would prefer that you feel good!

If your request creates only minor inconveniences for others, most people would be happy to pitch in (especially if you show your appreciation).

Finally, leaving early also keeps experiences more pleasant. As my grandfather always said, "never stay too long – it keeps people wanting more." And they always did!

Deborah A Barrett, PhD

Dr. Deborah Barrett, a psychotherapist in private practice, also writes the "PainTracking" blog for Psychology Today. This article is reproduced with kind permission from her educational website http://www.paintracking.com.©2012 Deborah A Barrett, PhD. All Rights Reserved.

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2 thoughts on “Helping Others Understand ‘Invisible’ Illness: What’s Enough But Not too Much?”

  1. mybest says:

    How many times have I wished that someone REALLY understood my experience?! It would sure make life easier (and reduce my need to explain and/or feel awkward). I know I have fantasized about certain people awaking feeling like me — this would change their view no doubt.

    But this article got me thinking about what it might really mean, however, if people really “got” my experience. I agree that we never really understand each other, and that it is up to each of us to decide what to share.

    I would not want my children, for example, to know how much I hurt all the time. It’s better that they understand that I sometimes need a rest. Otherwise, they’d feel bad too.

    Or my boss. She might not trust that I can do the job.

    So sometimes I do benefit from being able to keep it “invisible.” But I know I’ll still fantasize for more understanding from disbelievers. Especially when I’m being evaluated for disability, or judged for parking in handicapped from random strangers.

  2. livingwithcfsfibro says:

    So happy to see this piece from Deborah Barrett (I love everything she writes and am currently reading her book, “Paintracking”). This is a point of view (the complexity of seeking understanding of our illness) that is so unique and needed. Much food for thought! I wrote an article on a related topic (http://livingwithcfs.com/to-tell-or-not-to-tell/), and it’s so valuable to realize through Deborah’s article that we have the power to make choices and exert some control over how we show up in the world. Thank you for this article!

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