Sunday, January 8, 2017

You Don't Look Sick

“You don’t look sick.” Four simple words, but perhaps the phrase that over the years of my mom's illness has added the most to her suffering. “You look great, you must be feeling better.” People are just trying to be nice, but those kinds of comments can make her stomach turn even though she smiles in return. It’s that smile that masks the discomfort of her aching body and her rapidly beating heart. It’s that smile that keeps people around her from realizing how bad she’s feeling. 

When people say, “You don’t look sick,” she doesn’t want to be rude so most of the time she does the polite thing and simply replies with “Thank you” rather than trying to correct people's misconception. If it’s a closer friend, she might say, “I feel pretty sick though,” so they know what’s really going on since the truth is that she's very sick. It can use up all her energy to take a short walk or to go out for a rare meal at a restaurant. And when my mom sees herself in the mirror, she sees a sick person. 

Just as this is true for her, those with mental and physical illnesses usually have no outward sign that they’re not doing well, and this makes their struggle even more difficult for friends and family to understand. For most people who have never experienced a long enduring illness, it’s impossible to understand how sick people can feel even though they look completely healthy. And this often causes people who are sick to question themselves, adding even more suffering to their struggle.

Even though I don’t suffer from chronic physical illness, I can understand the frustration my mom has felt. I suffer from depression and anxiety, which are invisible diseases. You can’t see them. There’s no bleeding to indicate that I’m suffering. And because of the stigma attached to mental illness, I’ve become adept at putting forth great effort to hide my struggles. I’m so good at adapting that as recently as a month ago I told someone that I suffered from depression and anxiety and the person literally responded, “No way. No you don’t.” I wasn’t offended, just surprised that people truly can’t see how unhappy I often am just beneath the surface. It's not that I even want to them to be able to see it, it's just that it always surprises me that they can't. It feels to me as if a giant a stamp has marked my forehead with the message that I'm different from everyone else.

As I’ve gotten older, I’ve become more open about my mental battles because most people I talk to admit that they too are struggling with insecurities and unhappiness. And because I’ve been dealing with them for so long, I can often suggest books and authors that I've found helpful over the years. 

I’ve been dealing with how to cope with depression for so long I no longer feel stigmatized by it. It’s simply part of who I am. And the fact that I no longer feel as if I need to hide my depression has been incredibly freeing. As much as I can, I try to be honest with people, because being honest with them means I can be honest with myself. I don’t hit people over the head with the facts of my depression, but if the subject comes up, I don’t shy away from it.

Here’s how my mom responded to my questions on living with an invisible illness:

How does it make you feel when people say “You look great!”

To be honest, it's really frustrating. But I don't tell people that because I know their intentions are good. I've been chronically ill for almost 16 years, and I still dread the "You look great" greeting. And, I still don't have the perfect answer. Sometimes I joke, "Well, I spend so much time resting that I'm not aging." I say it as a joke to break the tension—some people find it funny, some don't. But oddly, it's true that I don't look much older than I did when I first got sick in 2001. 

Why do you think people assume you have to look sick to feel sick?

Well, in my view this culture does a poor job of educating us about the fact that many people have health problems—no matter what their. In the media, all you see is "Buy this, eat that, exercise this way—and you'll  be healthy." So first off, we're "taught" that people aren't supposed to get sick.

Secondly, there's very little discussion about how most people's health problems don't show on the outside—be it their physical or mental health. For example, people can be in terrible pain but they don't let it show. We should always assume that people don't necessarily feel inside the way they look outside. And we should always take people's word for how they feel no matter how they look. We should give them the benefit of the doubt and always believe them.

After I got sick, I realized that I had made the same mistake myself. There was a woman in our IT office at work who told me that she was in pain all the time. I remember thinking, "But she looks fine." So I try to be patient with people who don't understand because I didn't understand myself until it happened to me. But it would be nice if the culture didn't distort the truth so much.

What’s your advice for people feeling sick who don’t know how to respond when people tell them they look great?

Everyone has to find the words they feel most comfortable with, and your response is going to depend a lot on who says it to you. If you're feeling terrible and someone you trust tells you that you look great, consider being open about how you're really feeling. You might even talk a bit about your illness because they may be interested in hearing about what's going on with you. This can lead to you getting some much needed support. But if the "You look great" comment comes from someone who's just an acquaintance or the checker at the market, I've found that the best thing to do is to just say "Thanks" and change the subject.

Another piece of advice I'd give—and this applies to everyone whether chronically ill or not—is to not get down on yourself if you realize afterwards that you didn't give the perfect response. Don't look back and say, "Oh I should have said this" or "I should have said that...yada yada." Everyone looks back after a conversation is over and thinks of what the perfect response would have been. I suggest that as soon as you find yourself thinking about what you should have said, recognize that everyone does this, and then make the effort to let the interaction go.

What’s your advice for people who have friends or family who don’t believe they are sick?

I write a lot in my books and in my articles about how important it is to try and educate family and friends. But the fact is that some of them may not believe you're suffering—neither mentally nor physically. And that goes back to the fact that you look fine on the outside. 

If you have someone in your life who refuses to believe that you have health problems and they're mistreating you because of this, I recommend that you do everything you can to get that person out of your life. Sometimes you can, sometimes you can't. But, for example, if you have a friend who's always giving you a hard time because you can't do this or you can't do that, distance yourself from that person. It's better to have one or two friends who understand you than to have a lot of friends, some of whom don't treat you well. 

If you're not in a position to distance yourself from someone who refuses to believe that you're sick or in pain, I recommend practicing what Buddhists call equanimity. This is a balanced state of mind where we understand that life doesn't always go the way we want it to. Some people come through for us and some don't. 

The more we can make peace with this and accept it, the easier our life will be—and the happier we'll be. From the perspective of equanimity we'd say, "Well they don't believe I'm sick. Some people are going to be like that." Of course, you want to try and educate people but if that doesn't work, you don't want their lack of understanding to affect your peace of mind. 

I get so many emails from people who tell me that people say to them they're too young to be in pain all the time. Sadly, this can make them question the validity of their own condition. It's really important to not allow others who question the state of your health make you question the state of your health. You know how you feel. Be your own unconditional ally. Trust yourself.

How do you think the fact people can’t see your illness has affected how they responded to your condition, particularly early on in the illness? 

First of all, I can't be sure because no one ever said to my face "You're not really sick" or some of the other insensitive things that people have told me have had said to them. I'm fortunate no one has ever said anything mean to me. I have had people say to me "I'm tired all the time too," which simply means they don't get it because I'm not tired, I'm sick.

Early on, my friends and colleagues were confused about why I suddenly couldn't do the things I used to be able to do since I looked okay to them. Even to this day, 16 years later, I assume there are some people I know who probably think my illness is all in my head. Thank goodness my doctor knows it isn't, and my family and friends know it isn't. They see me enough that they can tell I'm truly sick. 

But if I run into people I don't see often, perhaps they think "Why does she say she's sick? She looks fine." It used to really bother me that people might not believe that I'm sick. For example, when I first got my disabled sticker, when I'd exit my car, I'd walk very slowly and actually try to look sick because I was afraid people would think "Why does she have a disabled sticker—she doesn't look sick." 

But I got over that because it was not healthy for me emotionally.

I would say 99 percent of the time, I feel: "This is how I am. It doesn't bother me what you think of me. Take me or leave me." I say 99 percent because every once in a while that old feeling pops up again. Something will happen where I wonder "What if they think I'm not really sick?" But it's very rare that I feel that way, thank goodness. And, as I mention earlier, it can be a self- destructive attitude because it can lead people to question their own judgment about the state of their health. 

So trust your judgment about how you feel, and take care of yourself according to how you feel. If you find yourself thinking, "What if they don't believe I'm sick?" just leave it alone and focus on taking care of yourself. Don't question your judgment. You know how you feel.

Any advice for people who are having trouble with their doctors?

If you have a doctor who doesn't believe that you are suffering the way you know you're suffering my first advice is to find another doctor. Do everything you can to find another doctor. 

If this is not a possibility, do some research on the internet and print out a short article or two to take with you to your next appointment. Some doctors are not open to information from the web, but printing out an article from an association specializing in the illness can show them that your problem is legitimate. Tell them you know they're busy but you hope they'll read it.

Lastly—and this is important—bring someone with you to your appointment if you possibly can. There's something about having a third party in the room that makes doctors take you more seriously. Perhaps because now there's a witness to the interaction. In addition, that person can confirm the symptoms you report and perhaps even speak up for you if you're feeling shy or intimidated. 

It's your right to have someone go along with you. For a long time I didn't realize that my husband could come into the exam room with me. But he can and when he's available, he always comes with me now. It's comforting for me, and I have found that it definitely makes a difference in how some doctors respond to me.


  1. I always ask people, "What does sick look like?"
    I carry the VEDS Emergency Room Procedures and the EDS Wallet Card found at Sharing this information is a great way to spread Awareness and it might save your life. I take nothing people do or say personally.

    1. Great information! Thanks for sharing! --M

  2. I didn't know before that Mara suffered from anxiety and depression. I have anxiety too, Mara (at its worst it was truly hell), so I really sympathise with you.i do hope it's not too bad at the moment.

    Toni, I too have experienced people's confusion between chronic pain and tiredness. It's curious. A good friend, whenever I explained that I wasn't well enough to do something, would often reply, "yes, I know you get tired." I'd always say, "well, it's moot that I'm tired...", but she'd still say the same thing the next time.

    In the last year or so, however, I've spent so much time resting that I do get very tired quickly if I do more than I'm used to. I'm trying to gradually increase my activities, but it's hard because that can increase the pain. Catch 22! Still, this year I do hope to make progress.

    Love and warm wishes to you both.

    1. Thanks Michael! I'm doing well at the moment. Yes, I think it's very difficult for people to understand the difference between chronic illness and what they experience as "tiredness." Hopefully with more general awareness people will start to have more understanding! --M

  3. PS: sorry for the typo above. It should say, "it's *not* that I'm tired"! :-)