The challenges of living with invisible pain or illness

In May of 2001, I got sick with what the doctors thought was an acute viral infection. But I didn’t recover. As the months went by and I didn’t get better, I felt as if I’d entered a parallel universe that I didn’t know existed. One reason this universe is largely invisible is that many people living with chronic pain or illness don’t look any different from those around them. We simply don’t look sick or in pain.

I should qualify that. The people who are with us all the time know that we are suffering. They see those subtle differences in our demeanor when our symptoms intensify. These are our caregivers (called “carers” in many countries) and they inhabit this parallel world with us. At the end of this piece, I’ll talk about the unique challenges they face.

I was surprised to learn how many medical problems are invisible to others, even illnesses that are life-threatening, such as cancer and heart disease. I’m sure that most television viewers who saw Venus Williams—recently diagnosed with Sjögren’s Syndrome— watching from the stands as her sister played in the U.S. Open tennis final, thought, “But she doesn’t look sick.”

What are some of the experiences we share in this invisible universe?

Guilt, embarrassment, and isolation. We often feel it’s our fault that we got sick or that our bodies broke down in some way—as if it’s a personal failing on our part. We live in a culture that worships at the altar of wellness. We’re bombarded by ads that tell us we can be healthy all the time. Yes, it’s okay to get sick or be in acute pain due to an injury or a surgical procedure, but then we’re supposed to get better. Everyone expected that of me and I expected that of myself. For years, I felt embarrassed that I wasn’t living up to the cultural norm.

This expectation of perfect health is especially hard on young people who face pressure from family and friends to “hit the gym” and “stay in shape.” I didn’t realize how many young people struggle with chronic pain and illness. I was already a grandmother when I got sick, so, if I felt embarrassed, imagine how they feel.

Many of us believe that we’ve let our family and friends down. In the early years of the illness, I used to sob to my husband, “I’ve ruined your life.” I count myself fortunate to have had his shoulder to cry on because many spouses and partners don’t stick around, leaving those who are sick or in pain on their own, sometimes to raise young children. The isolation can be devastating, as can the guilt over not being as active a parent as one had dreamed of. Even those of us who aren’t left alone have to adjust to a life of relative social isolation as most of our friends slowly drift away.

Frustration at the lack of understanding. You simply cannot make intense chronic pain or illness-related debilitating fatigue go away through strenuous exercise, although I’ve read many accounts of doctors who have prescribed just this as a treatment. This lack of understanding from the medical community can have serious, even deadly, consequences because people become gun-shy about seeing a doctor should a new symptom appear—a symptom that could turn out to be a sign of a life-threatening, unrelated medical problem.

We’re often treated as malingerers by family members, friends, the medical profession, and the general public. After I was interviewed on a local National Public Radio show, I got an email from a listener telling me that he didn’t want his tax dollars going to support “an amotivational slacker.” Nice little phrase, that. If you figure out what it means, please let me know. All I know is that when I read it, it stung.

People with chronic pain conditions are sometimes labeled as “drug seekers” in emergency rooms and, as a result, are denied much-needed pain relief medication. Several people have told me that, unless their personal doctor is available to vouch for them, they won’t go to the ER, no matter how unbearable their pain becomes.

The daily stress and burden of not knowing what to commit to. Before committing to even the simplest of activities, we have to pause and first weigh the plusses and minuses. How do we compare the plusses and minuses of going to lunch with a friend (where the minuses may include having to rest that afternoon) with those of attending the wedding of that same friend (where the minuses may include having to spend a week or two in bed recovering)? This constant need to scrutinize even the most mundane of activities can itself use up our energy stores for the day!

In addition, we have to try to predict ahead of time how we’ll feel so we can decide if we should even accept the invitation. One of the characteristics of chronic pain and illness is the unpredictability of their intensity on any given day. Do we say “yes” to an invitation when we may have to cancel at the last minute? If we always play it safe and say “no,” we may miss out on some fulfilling activities and socializing that we would have been able to handle when the day came.

The dilemma of how to “present” to the world. Should we spruce ourselves up and risk people erroneously thinking we can participate fully in whatever they’re doing? This is particularly a dilemma during the holidays and at family gatherings. People suffering from chronic pain or illness will take great care to look their best for everyone, only to be criticized for not pitching in more with the cooking and clean-up. The alternative is to stay in our sweats which can lead to feelings of guilt that we’re letting ourselves go and not doing enough to lift our spirits.

We’re often misjudged by others if they see us looking nice or being active in any way. Healthy people tend to assume it’s all or nothing: we’re either sick or we’re not; we’re either in pain or we’re not. And so, if they see us doing anything “normal,” they assume we’re 100% well. This has happened to me many times. Someone will see me at an espresso place with a friend and assume I’ve recovered, unaware that I came from the bed and will collapse on it after the visit. People aren’t deliberately being insensitive. They just don’t know.

More tragic, I know people who’ve had their long-term disability payments revoked because an investigator sent to spy on them saw them being active in some way. In one instance, the investigator saw the person doing some gardening in her front yard. Wow. Limited as I am, I sometimes pull weeds; I can’t ask my husband to do everything!

Caregivers. Caregivers face their own set of stressors. They must live with the frustration of not being able to make their loved ones better. They’re suddenly thrown into the role of patient advocate in the medical system, a role for which they have no training or expertise. They often have to take over the running of the household. Caregivers see us at our worst, as we put on a good show for others (for me, this means running on adrenaline), only to collapse when we’re in the privacy of our own homes or apartments.

Caregivers of a spouse or partner also have to adjust to the isolation that results from losing their companion out in the world. This has been very hard on my husband. For the most part, when he goes out, he goes alone. When he travels to visit old friends, he travels alone. It’s very hard. I can tell.

Many caregivers, particularly men, suffer in silence, not sharing with co-workers or friends the burdens they bear and how difficult their life has become. It’s not surprising that so many of these “invisible caregivers” are clinically depressed.

These are some of the challenges that those of us with chronic medical conditions and those who care for us face. It’s as if a second, parallel life has been superimposed on the one we’re already living. No wonder we feel that this second life is a full-time job in itself—a job we didn’t train for and which we are often ill-equipped to perform. It took me many years to find a measure of peace and joy in this hand I’ve been dealt.

My heartfelt wish is that you find your measure of peace and joy too.

Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversHer forthcoming book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.

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  • http://makethislookawesome.blogspot.com/ PamC

    Absolutely brilliant and beautifully written!

    • http://www.howtobesick.com Toni Bernhard

      Thank you so much, Pam, especially your compliment on my writing! Warmest wishes to you, Toni

  • http://preliatorcausa.blogspot.com/ Joé McKen

    Yet another example of how there’s so often more to people than meets the eye.

    Thanks for writing this. People need to understand. The more who speak out about these things, the better.

    • http://www.howtobesick.com Toni Bernhard

      Thanks for reading and commenting on my piece, Joé. I appreciate your insight — yes, there’s often so much more to people than meets the eye… Warmest wishes, Toni

  • Anonymous

    Wow! It´s like you´ve been inside my head listening. We share a lot you and me. I recognise everything you write.

    • http://www.howtobesick.com Toni Bernhard

      Hi Carina. Thanks so much for this feedback. It’s amazing what those of us with chronic pain or illness share and we don’t even realize it until we read about each other’s experiences. It’s nice to meet you. Warmly, Toni

  • http://lodewijkbos.com/ Lodewijk Bos

    Thank you so much for sharing this, as it hits the nail. It is the
    second time this week that I came across a similar inspirational (The
    Spoon Theory being the other) at a moment where my physical pain is
    still increasing 5 years after ending my chemo (www.lodewijkbos.com),
    but still being the consequence of it.

  • Anonymous

    If this discussion is surrounding the term “fibromyalgia” I agree; many top rheumatologist can’t even agree if this is an actual diagnosis; I do agree also it must be something but what to call it and how to treat it is the big question. I have found getting mental health involved within the treatment plan and limiting addicting narcotics and involving movement and exercise is part of the basis for treatment and key to improving the quality of life for many. I think it is a ‘catch all” term for a problem that is mainly a diagnosis of exclusion; “well if it isn’t this it must be that” mind set and that ends the discussion and much more the further exploration of the real cause.

    • http://www.howtobesick.com Toni Bernhard

      Hi skiegypt – The discussion certainly includes fibromyalgia. It’s a little understood condition, even though there are approved medications for it. I know so many fibro sufferers who, like me, are misunderstood by the public and the medical profession. I’ve written a few articles on dealing with pain without medication. I’ll put in a link to one of them in case you’d like to see it. It will link you to the other pieces. 
      http://www.psychologytoday.com/blog/turning-straw-gold/201110/5-techniques-help-physical-pain

      Warmest wishes to you,
      Toni

  • http://twitter.com/FMDGirl Kari Ulrich

    Thank you so much for bringing this topic to light! I have been diagnosed with a vascular disease and it is a “invisible illness”.  I would like to spread awareness about a under diagnosed vascular disease called Fibromuscular Dysplasia or FMD. Many patients present with hypertension at a young age, stroke, or dissection. For a patient perspective on FMD  Please visit us at FMD Chat on Facebook: https://www.facebook.com/#!/FMDChat

  • http://twitter.com/QuintBy BRUCE KIMZEY, JD

    What I find interesting apart from your article itself are the comments thus far – not a one of them is written by a provider. This suggests that physicians do not tend to read  subjective ‘patient-centric’ observations, a fact from which it could be inferred that providers lack interest in obtaining greater understanding of their patient’s condition within the context of the outside world.

    Further, it isn’t just friends and family who fall victim to the “you don’t look sick to me” viewpoint.  Physicians take this into account in assessing the validity of their patient’s complaints despite the fact that they know that many severe and chronic illnesses do not manifest in a way which renders the patient sickly looking.

    • http://www.howtobesick.com Toni Bernhard

      Hi Bruce. Yes, I noticed that no health providers have commented on the article. Sigh. And thanks for pointing out that physicians also evaluate us based on if we look sick or not. Lots of physicians write for KevinMD. I hope that at least some of them are reading the “patient” pieces. Warmly, Toni