Turning Straw Into Gold

Life through a Buddhist lens

The Challenges of Living with Invisible Pain or Illness

Even illnesses that are life-threatening, such as cancer and heart disease, can be invisible to others. 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." Read More

The nail on the proverbial

The nail on the proverbial head...

Thanks, Lupoid!

That feels great to hear. Warmest wishes, Toni

Wow...so well said Toni. As

Wow...so well said Toni. As someone who fell ill 5 years ago @ 30 years old, I identify completely with everything you said here. I wish I could share this with everyone I know but I'm still embarrassed by my illness and think most people won't spend the time to read or think about it. As you say, many friends have drifted away. Anyway, I just wanted to say thanks for writing such a great piece and letting me know i'm not alone out there.

I'm so glad you liked the piece

I understand that embarrassment. I felt it for many years and still do sometimes even though it's irrational (we're in bodies and they can get sick!). I'm so glad the piece made you feel less alone. Warmly, Toni

CFS

YOU ARE AMONG SO MANY, MY DEAR. EVEN MY FEW CLOSE SUPPORTERS CAN NEVER FULLY UNDERSTAND-- ONLY IF THEY COULD WALK A ''BAD''DAY IN OUR SHOES. AT LEAST WE HAVE EACH OTHER-SO VERY MANY OF US!
TONI; HOW DO YOU EVER MANAGE TO WRITE A BOOK? MUCH LOVE TO ALL CFS SUFFERERS.

Hi Bonnie

How did I manage to write a book? It wasn't easy. In fact, I talk about it in my book! Many people with CFS say it's like reading their own story. Thanks so much for reading and commenting here. Warmest wishes, Toni

Tony, this is one of your

Tony, this is one of your best pieces, eloquently written as usual. One of the things I love about your style is that you write from a place of such graciousness and non-bitterness, such as "it's not their fault; they simply don't know". I'm so, so angry that a (presumably) educated NPR listener would send you such an ignorant and insensitive email. I'm sorry to hear that. And I could especially relate to the dilemma you mention of "how should we present to the world?" I'm not bed-bound, thankfully, and there are things I can now do (even if at a later cost that I decide is worthwhile). But I constantly worry "do I look like someone with a chronic illness?", "SHOULD I look more like someone with an illness?". Sigh. Thanks for putting what we go through into words, once again.

Thanks for your comment, Anita

It really stung when I read that email, but then I thought, "How unhappy he must be to have lashed out at me like that." It took a while for the sting to wear off despite my compassionate thoughts about him! I know that craziness of constantly wondering if we should look ill or not look ill. It's one reason I said it's a full time job! Warmest wishes to you, Toni

This was fantastic and really

This was fantastic and really hit home for me as a chronic pain patient for the past three years.

I enjoyed reading your phrase toward the end about how we lead two parallel lives. I had never thought of it that way, but it sums up exactly how I feel.

I have adapted pretty well to my pain, but I struggle constantly with the idea that as much as I want people to know and understand how I feel, I still have most of my career ahead of me and I don't want to be known as a disabled employee by our community. The reality is that being disabled is very misunderstood.

Thanks for your comment

Yes, that conflict over how we want to be perceived in the world is such a tough issue to resolve. It's one reason I said that this feels like a full time job. That parallel lives idea came to me while I was editing the piece. I knew immediately that it fit. Warmest wishes to you, Toni

What a nice twitter surprise

Ms. Bernhard,
Life goes on, and rarely do I bother to read most "inspirational" stories about how people with invisible illnessess feel, or should feel, nor do I seek out these articles and rarely discuss them on twitter. What a very pleasant surprise it was to see and read your article that you posted on twitter today! As I said, it mirrored my story and feelings almost to the "T". Several years ago while on a business trip I came down with a virus that left sick and unable to get out of the bed for 3 days in a strange state alone in a hotel room. That was the beginning of the end of my life as I knew it. Your writings on how it is to be in pain, and be ill and have no one, not even the medical community acknowledge something is wrong was spot on! To have your family and friends start to think you're nuts, or lazy simply because no diagnosis has been found yet. Loved loved loved how you put into words the way so many of us feel and what we go through. Excellent! Thank you and I hope to "come across" more of your work.
Finally diagnosed (after 3.5 years) with Multiple Sclerosis and the views of others who just don't "get it" remain the same but I'm getting used to it.
Catherine

Hi Catherine

It does sound like the beginning of our illnesses was the same. I've been tested and don't apparently have MS. What's wrong with me is a mystery -- we think it's a chronically activated immune system. If you're interested in more of my writing, I'd recommend my book. It's a practical book, full of tools and practices to help us live well with chronic pain and illness. And it has more of my personal story in it (often told as a way to illustrated how I've used the practices that I suggest). Warmly, Toni

invisible illness

Thank you for writing such a great article. It states things the way I wish I could for those who don't understand my illness. I have been asked, "Oh, aren't you well yet?" Unfortunately,so many don't understand at all and don't even try. Great article!!!

Thanks so much, Paula

I'm so glad that the article resonated with you. Perhaps you could get a few of those people who don't understand to read it. I wish it could reach beyond those who are suffering from chronic pain and illness. Thanks for your kind comments. Warmly, Toni

A counselor's comment

Disturbing to hear the lack of empathy you encounter, in response to your invisible chronic illness. Unfortunately, some of my clients encounter it as well, though a different version, because they are HIV+. They have a stigmatizing illness that inspires a lot of negative and hurtful talk by people who don't think, and generally don't have accurate information. Clients sometimes conceal their diagnosis from loved ones to avoid the risk of being hurt, and put a good face on. They are often well enough to go about their normal lives, but feel entirely different, and nobody knows. What a poignant and frustrating dilemma.

I can only imagine how difficult it is to not even have a diagnosis. Perhaps people respond so unkindly, minimizing your challenges, because they are so anxious: we don't deal well with things that have no name, and make no sense. How can any of us protect ourselves?

Living with ambiguity is not easy. I applaud your courage in bringing it into daylight, so that others can be supported.

Thanks for your comments, Lynn

I agree that people feel uncomfortable with ambiguity, but I've also learned that a lot of people are uncomfortable around illness, period -- whether it has a name or not. I talk a lot about this in my book. For many years, I was angry and resentful over the fact that so many of my friends drifted away. But I came to see that it wasn't about me. It was about their discomfort around illness (that's not the only reason friends drift away but it's a major one). It's not that they think I'm contagious. I think that illness reminds people of their own mortality and of the vulnerability of our bodies in general.

I'm so glad you found my piece. By the way, several people who are HIV+ have written to me, saying that my book was a tremendous help to them.

Warmest wishes,
Toni

I agree wholeheartedly

As someone who lives with an invisible illness, I wholeheartedly agree with everything you've said here Toni. Thank you so much for putting the effort into writing such carefully thought out pieces when you are struggling with ill health yourself. I've googled you several times to find other articles/interviews with you as I enjoy hearing your perspective on these issues.

Thanks so much for reading and commenting

I'm glad that you like my writing. I don't know if you've read my book or not but many of my online articles expand on themes from the book. Thanks so much for your support. Warmly, Toni

Thank you

Thank you for a cogent and beautifully written essay.

I once gave a talk at a women's studies conference about the additional burden that many people with invisible diseases carry because they are female, and (frankly) the medical profession tends to ignore them anyway.

I was not prepared for what happened after the talk. Both professors and students came up to me afterwards to tell me of their own condition - severe rheumatoid arthritis, lupus, MS - that they were afraid of confessing to in public. Afraid they would be discredited. Afraid they would lose status.

Isn't that terrible? People who must be STRONGER than others, afraid because if they spoke up about their invisible disease, they would be treated as if they were WEAKER than others.

I like the comedian Bill Mahr, but he is infected with this conviction that if he eats right, exercises right, and is careful with whom he shares certain recreational activities, he won't get sick. And is very vocal about it.

I think that underneath it all, Mahr, and probably the rest of the Baby Boom generation, are afraid of death. Illness is a chink in the armor. Chronic illness shows how random health can be, which is frightening. I di not know how he is going to handle it when, some day, something DOES happen to him - which is, of course, inevitable.

Thank you again for your essay. I hope it is widely read, and thought about, by those outside our community of chronic disease. Hope, but doubt it.

Thanks so much for your comment

It was fascinating to read about your experience at that conference -- how both professors and students came up to see you afterward to share their "secret."

I like Bill Mahr too but, like you, have noticed his irrational views on health. It's funny, coming from someone who is so anti-ideology. I hope it won't be too hard on him on that day when his body, too, shows its vulnerability.

I loved your comment: illness is a chink in the armor. I talk about this in my book -- how we are in bodies and bodies get sick and injured and old. But it's still seen as a sign of weakness when it happens.

Let's hope that my piece is read outside the community of chronic illness -- we can always hope anyway!

Warmest wishes,
Toni

Similar Experience

I had a similar experience, way back when I first got sick. After hiding it from my co-workers (engineers) for quite awhile, I finally went around and talked individually with them. Turned out that in my group of 8 there was one guy whose liver was dying & no doctors could figure out why, one who had had an antibiotic-resistant sinus infection for 4 months, and one whose father almost died the previous weekend. And NONE of them said anything to anyone, until I told them of my health problem. It's so sad, to live with that kind of isolation. And much more common than we think.

I think it is more common than we think

I wonder now what I'd have learned at the law school if I'd gone around and talked to each person individually about my illness. It would have been an education in chronic pain and illness -- I'm quite sure. Warmly, Toni

Comfort of Sharing

Over time, the thing I've found most valuable is the comfort of knowing there are others who truly understand this illness. Unfortunately, the people who understand are suffering, for that I feel sad. Thank you for being one of those sources of comfort, it is as therapeutic as anything I've thus far experienced in this journey. I am sorry someone felt the need to make such a cutting statement to you (and by the way, I don't understand it either:-). I've always felt if people would take a few breaths before responding to most anything, their remarks might be a tad less thoughtless. In this case, it might not have proven true.

Last week I received a short email from a former co-worker. She'd emailed me to ask how I was and I replied. I've learned not to reply at any length, most people simply don't want details, or even the truth that answers the question "how are you?". In any case, she wrote back that I must not be able to tell that I was getting better; that she could tell from my writing that I was much improved. I ask you, any of you actually, are you not acutely aware of your condition at any point in time? I was also given the advice in that same email that God's time is not my time and that he would see to it that I heal completely in his time. Merely because we take care to carefully write, and use devices and software that help with this, these things do not a cure make. What people do not see is the time it takes to edit, the saved drafts, the time in between
thoughts, the endless pauses from a drain down of mental functioning.

As for appearance - this sounds silly but it is a real problem. I find myself putting great effort into getting ready for a doctor visit, visit from a relative, etc. Are we supposed to appear slovenly, unkempt, looking as ill as possible? There was a time that showering was near impossible, to this day it's still a mighty effort, one I will make if at all possible. You know, the bucket of energy we have each day, the deals we make with ourselves, "if I do this, I cannot do that". Sometimes the bucket is empty, sometimes there's enough for a load of laundry, a simple lunch, a phone call. We may be ill but we still want to make a good appearance, we are human beings after all! I prefer being thought of as a person with an illness as opposed to a sick person.

The writings of others is a lifeline for me. For yours Toni, I feel tremendous gratitude, thank you:-)

Sharon
(Wonderful to see Mary S. here today; her writings have seen me through some of the darkest times. I
cannot venture a guess as to how many in-my-head thank you's I've said to her as well)

I appreciate your concern for me

It's so kind of you to acknowledge how much that comment "stung" when I read it in that fellow's email.

Your co-worker just doesn't understand. Wouldn't it be wonderful if people like her could read my piece and get a feel for what life it like for us. Maybe in time, that understanding will spread among those who haven't yet tasted the inevitable health problems that will befall them.

Yes, I know so well that dilemma of how to "present" to the world. Several people have written to me about that difficulty, especially when facing family.

Thanks again for reading and commenting. Warmest wishes, Toni

CFS

Sharon; I loved your letter. Wish we could talk in person! As my husband would say,''it sounds like I WROTE it!'' My youngest daughter wants me to read a "positive thinking book''.( I have read those & heard excellent speakers in my past life in sales)
She told me she has to be around positive people & I AM too negative. Which no doubt I am. I suffer with depression during my worst
spells with this disease & am not exactly the most fun person then.Not many have mentioned depression but that really adds to my feeling of being helpless & hopeless! How I treasure the times I am feeling able to do things even though I know I will pay for it later! But how does one ever get caught up to all that needs doing? We need full time maids & good meals to eat!!

Hi again, Bonnie

I often say (as I do in this piece) that being chronically ill feels like a full time job. It's really tough and I do think some people become depressed as a result of it. Lot's of people who've read my book say it's such a relief to NOT just be told to think positively. That just doesn't help and it certainly doesn't "think" our illnesses away. Warmly, Toni

Wonderful as Always...

Toni, I related to your story from the first time I picked up your book. Also a professional who had to leave a career I spent 7 years in graduate school for, after being struck with a viral illness (in my case mono)...Overnight, or so it seemed, my life took a drastic turn. 15 years later I continue to live life, with its ebb and flow, of someone with debilitatig chronic illness. You words always resonate with me, but this particular article hit every nail on every head. I have shared it on my own FB group page (Notes From The Couch), my FB personal page, and I am going to put a link to it on my website as well (www.NotesFromTheCouch.com). I know that the people who read my site would also feel the way I do about your piece! Thank you for sharing yourself so that we can all feel less alone on this journey. All my best, Shari

Thanks for sharing my piece, Shari

I'll have a look at your website and put it into my Google Reader. It sounds like we've been on similar chronic illness journeys. I'm glad that you have my book and hope that some of the practices in it have been helpful. Warmest wishes to you, Toni

Re: Feels so supportive to read this!

Hi Tony and others;

It's great to not feel so alone, as others have said. The contradiction in my case is that while my sx's include a chronic, low-grade flu-like feeling (the 'yuck' factor) coupled with what feels like a 500lb weight that feel on my head and never left, what's also true is that below the neck, my body is healthy and strong, not an ache or pain anywhere (and I'm 47 as of Oct 2!), with so much life force that I actually CAN exercise (though its no cure, as you alluded to in your piece).

Most who don't know me judge me on the initial appearance of what looks to be an in-shape physique. But upon closer look, it's obvious that all is not well; that I surely have some sort of illness. The circles under my eyes are so dark they're purple...even black sometimes. Strangers will ask if I got punched in the eye, have mascara running, or am ill. I've gotten creative and sometimes respond, "I had racoons as parents in a past life - ha, ha".

Anyway, similar to others, my illness came on suddenly, and in my case, 16 yrs ago. It's been the same ever since, changing on a scale between 4-10 in severity daily, but ohterwise, no change at all. The past 3 yrs, since a job loss, I've spent going from tx to tx in hopes of a cure before I had to get back working. Well, no such luck. Thousands of dollars later, with no good outcome to speak of, I need to get back working. I'm worried about getting anywhere on time, especially if I'm not able to get a workout in first, in order to get my endorphins kickin so I can have a good attitude starting off my day. I don't get much empathy from others, for reasons you've alluded to in your piece. Just it's nice that others understand - mostly anyway as I'm guessing most people w/similar illnesses also have body aches/pains - what it's like to feel so sick yet not appear so sick.

Anyway, so appreciative of all your writings Tony. Tahnk you so much!

Thanks for adding to the discussion

It's fascinating that you can exercise because the illness only affects you above the neck. I think that's quite unusual and I can see that it must make it even more difficult to get others to understand your illness. Thanks for reading and commenting. Warmest wishes, Toni

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Toni Bernhard, J.D., is a former law professor at University of California at Davis. She wrote the award-winning How to Be Sick and, recently, How to Wake Up.

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