Three colorful speech bubbles.

Most of us with chronic illnesses have heard, “You don’t look sick.”  When you live with an autoimmune disease, this comment is common. How do you react and then respond?

There are times when I’m happy to hear this comment and times when I’m displeased. I do have a prepared response for this statement, but it doesn’t always fit my emotional or intellectual needs at the time. I hear the comment often enough that I thought it a worthy topic to explore. My hope is that this article gives you ideas to help you craft your best response for any situation.

I believe there are a number of factors to consider when determining the best response to, “You don’t look sick.” Consider your:

1. Personality.

2. Disease activity level.

3. Emotional status.

4. Time since diagnosis.

5. Relationship to the person.

Each time someone tells you that you don’t look sick, you need to examine your answers to all of these questions and ask yourself the ultimate question:

Why do you care?

Why do I care when someone says, “You don’t look sick?”

The degree to which I care about the comment depends on how I’m feeling and who is saying, “You don’t look sick.”

As the chair-elect of the Sjögrens Foundation, a key reason I care is that I see it as an opportunity to educate people. Often times people are making the statement in awe – as if they can’t believe I can be so ill and still look pretty good. That’s an opportunity to educate.

As a Sjögrens patient, I need to step through factors two, three and five listed above in order to answer the question, “Why do I care?” and then give the best response. Since I’m well versed in my personality and I’ve been diagnosed a long time, I don’t need to consider factors one and fur.

Much of the time, I am so thankful that I don’t look like I feel. In my industry (technology) my age is already an issue, so looking as well as possible is important to my livelihood. I also value taking care of myself and being presentable. Being presentable to others gives them the impression that I’m handling my life well, which adds to my desire to appear healthy. So the fact that I don’t look like I feel helps me actually feel better.

The first few years of my diagnosis, it hurt my feelings when friends would make this comment. Did they not believe me that I’m ill? Even some friends that have known me a long time could not understand a disease that couldn’t be cured, yet didn’t quickly progress to kill you. When I hear the comment now, it is usually by new friends or acquaintances and it only hurts when I’m feeling very ill. I have learned to recognize that this feeling has more to do with my own sadness of having to deal with Sjögrens than the other person’s comment.

There are also times when I simply don’t care when someone makes a statement. This is usually when a random person hears I’m ill, makes a comment, and I decide that a response simply isn’t worth my time. The comment is then out of my head in two seconds. We use enough energy taking care of ourselves, so why waste it when no impact can be made.

I believe people have different reactions at any given time depending on the factors below. The trick is to craft your responses that make you feel good and that allow the other person to clearly hear you and feel good about receiving the information.

1. Your Personality

My nature is to be analytical and calm, with an ability to easily see another person’s perspective. If you’re into Myers-Briggs personality types, I’m an ENTP. So it works well for me to consider the other person’s reason for making the comment and calmly offer a response. I am then available to discuss their questions, should they have any. But this is in line with my personality.

I have a friend with a few autoimmune diseases and her personality is all fire. She tends to approach people more aggressively and ask them how they would feel if they had an invisible disease and received that comment. She is happy to discuss specifics, but I imagine that her approach may close down the conversation. However, she feels good standing up for herself and the other person realizes their comment felt hurtful to her (and may to other people with an invisible disease). Her goal is to show the person that the comment is hurtful.

Our go-to responses to you don’t look sick are polar opposite. But our personality drives the approach.

2. Your Disease Activity Level

I have Sjögrens and sometimes I’m doing well and sometimes not so well. When I am more ill and hear the comment, I may wonder if the person doesn’t believe that I’m ill. Do they think that I am playing a “victim role” or using a “fake” excuse to get out of something? When I am very ill, I am also emotionally “weaker,” so these questions arise. These questions also arise if the comment is delivered with a tone that suggests disbelief.

When I’m feeling well, the comment tends to come from people who are curious and I launch into some education about Sjögrens.

Do you notice a difference in your response depending on your disease level?

3. Your Emotional Status

Above I made a comment about being emotionally weaker when I’m in a relapse.  But it is also worth considering the other emotional challenges in life when your disease is not acting up. When I’m feeling challenged emotionally, this comment feels like an additional emotional burden because of the underlying meaning it may have. Of course, our interpretation of the meaning behind the comment has a great deal to do with our own emotional status.

Recognizing my emotional status is more of a touch point for me as I tend to be “in my head” most of the time.

4. Time Since Diagnosis

If you have been diagnosed for less than three years, hearing you don’t look sick has a tendency to hold a bit more power than if you’ve been diagnosed for longer. Be sure to consider this in the formulation of your answers. Early on, your family members and close friends may make the statement and it’s an opportunity to educate them. Once they understand more, then they will make the comment less.

5. Your Relationship to the Person

Is the person commenting a friend, a co-worker, or an acquaintance? Some hold greater meaning such as family and close friends. Here are a few comments about different relationships.

Family: It’s important to remember that our family loves us and that they also hate that we are ill. They are also in a grieving process because they lost “the person they know and love.” Even though we are sick, I think we need to have empathy for their loss as well. After diagnosis, it takes time to educate family about what your disease is and how you react to it. It is also important for them to know how you prefer to receive support and how you can give them support.

Friend: Frankly, some friends are able to make this journey with us and some are not. Be clear about who you can depend on and with whom you can enjoy activities and conversations. Once you are clear on the friends you can depend on, then you need to dive deeper into your questions. Why are they asking? If a dependable friend is making a comment, they may need more education about the disease. Or perhaps they miss how the friendship used to be and you can mourn together.

Several years ago, I had asked one of my friends why she stated that I didn’t look sick. We had a quality discussion about how I had been so Sjögrens-focused that I had not been interested enough in her life. This was about two years after my diagnosis and helped snap me out of my self-focused grieving.

Casual Acquaintance: I simply choose to educate or ignore the comments depending on my energy and the impact I may have. If it is worthwhile, it is always beneficial to educate people.

I do have a response I use most often when people tell me, “You don’t look sick.” I deliver this statement with humor:

“Thank God! You wouldn’t want to see that!”

In one quick, light-hearted answer, I believe I have educated the person that:

1. I know I don’t look sick, but I truly am.

2. I am grateful that I don’t look as bad as I feel.

If they could see how bad I feel, it might make them uncomfortable.

I then can gauge their reaction and see if it is an opportunity to educate them on Sjögrens syndrome. Perhaps with a bit of education they can show more empathy for those of us struggling daily with an autoimmune disease (or two, or four).

Follow this journey on Sjögrens Life.

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Thinkstock Image By: ma_rish


Dear Lorde,

First off, I want to start out by saying your music has literally seen me through all kinds of sh*t. It has seen me through my lonely sophomore year at university. But most important to me is that it has seen me through the last three which have been filled with emergency room visits, hospital stays, doctors’ appointments, and multiple surgeries. Song like “Bravado,” “Glory and Gore,” “Swinging Party,” and “Biting Down” helped me keep my head up and continue to fight. They are anthems for me. You may not have realized at the time, but you are connecting to a group of people who need fight songs. Who needs songs and music that make them feel like other people are pushing through. I know you didn’t mean to and these songs don’t have the same meaning to you but that’s the beauty of art. You make art and by making this art you connected with me, a person with an autoimmune disease.

That’s why I’m writing this letter to explain why your words — how you said being friends with famous people like Taylor Swift is “like having a friend with very specific allergies. There are certain places you can’t go together. Certain things you can’t do. There are these different sets of considerations within the friendship. It’s like having a friend with an autoimmune disease” — are hurtful to me.

I’m not writing to scold you or make you feel like you’re an awful person. I don’t know you but I don’t believe you could be an awful or cruel person. I just want to let you know where I’m coming from as a true and devoted fan. Every friendship has it own set of struggles. I have no doubt it can be difficult to be friends with Taylor Swift. She is always surrounded by the media. But being unable to escape the media and being unable to escape your body are two very different things. I don’t pretend to know what it is like for Taylor. You shouldn’t assume to know what it is like to be us.

What makes your statement hurtful is that everyone I know in the autoimmune disease community already feels extremely guilty. We feel bad for all the canceled plans, all the things we want to do but can’t. We feel extremely guilty because we aren’t the same people we once were and that others have to actively sacrifice and continued to decide to be our friends. I have been blessed with a loyal group of friends but even with that loyal group of friends there are times when I see them freeze because they don’t know what to say or do. There are times when I can see the frustration on their faces and I don’t know if tomorrow they will wake up and decide being my friend and dealing with my issues are too much for them.

I know we plan ahead when we go out and I know they get annoyed when we have been planning to go out for a month and the night comes and I can’t move from my bed. They try to hide it but I’ve seen it. I try to push all these thoughts to back of my mind but my body is constantly reminding me of my limitations. So for someone of your status and platform to validate that my limitation can be taxing on a friendship is a bit crushing.

I got my official diagnosis of Sjogren’s syndrome which is a systematic disease that can affect your joints and your organs. It’s mostly know for causing dry eyes and mouth which come with their own sets of complications like not being able to cry or swallow your favorite foods. So I’m new to this community. But I’m not new to these problems. They have been going on for a majority of my life. It was a relief to have answers in the form of my diagnosis but it was also devastating to know I would live like this forever. I know you said you f***ked up and that you are sorry, but I didn’t want you walk away from this without knowing why or what is wrong with your statement.

This does not change how I feel about you. I love you and your music. We all say things sometimes without understanding why these things can be hurtful. I know I’m guilty of this. I will still try to see you on your North American tour and mostly importantly if I’m having a bad flare day I will still blast “Liability” and “Liability Reprise” because even if you didn’t mean for it to be, it represents my feelings about my relationships now that I have this illness. So thank you for your beautiful music.

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Photo by Constanza.CH via Flickr

Many people trying to find answers find themselves here. You’re in physical pain, experiencing bizarre symptoms for something yet to be discovered. You lay around with debilitating fatigue, looking to Google to guide you to a health forum with other people like yourself. They understand you.

You’ve already been through a handful of doctors. Some are charming and respectful, tastefully explaining they don’t know how to treat you. There are others who are quite the opposite — you know, the ones you wished you never saw. They question the validity of your symptoms. “Oh, you’re tired all the time? Do you have suicidal thoughts or actions?” You already know what they are getting at but you say, “No.” They try to argue with you, explaining that depression isn’t always being sad but it can be fatigue, too. Again, you protest. They send you on your way with a diagnosis of depression and a prescription for an SSRI. Or maybe you were dismissed like I was when you went to your primary doctor. You had labs that showed an autoimmune disease, but again you were dismissed and later fired by the doctor because they didn’t believe the labs (or even ask to look at them) and thought your only diagnosis was anxiety.

Well, guess what? I do.

I’ve had anxiety since my symptoms arose. I began to get anxious because nobody believed me. What I felt, what I noticed, well, that was apparently “normal.”

I saw roughly 10 doctors before I was diagnosed with undifferentiated connective tissue disorder (UCTD) and later on Sjogren’s syndrome. I was relieved. Let me repeat that. I was relieved. You know that moment you get your acceptance letter in the mail from the university of your dreams? That was me, shaking, crying, and thanking God that someone listened to me. Someone talked with me (not to me), they dug a little deeper and found an answer. All the heartbreak, family members telling me I was lazy, that I worked out and nothing was wrong with me because I looked healthy. (Now isn’t this sad? Was I relieved that I had an untreatable disease? No. Just relieved that what I felt was real).

This was my moment, though. The moment that I actually felt like I could relax for a second and just breathe, because even though there isn’t a cure I still knew that I had an answer, and with that answer I had hope.

I started getting referred to other doctors for my bizarre symptoms. In the end they weren’t that bizarre. Uncommon? Sure. But “crazy,” no. I now have a handful of specialists who help me manage this disease and a year later I’m happy to report that I’m doing pretty well.

Yes, I do have anxiety. I have anxiety when I’m in that moment of pre-syncope and I don’t want to pass out in front of people. I have anxiety when I see a new doctor. I’m defensive and stern when they throw in their opinions. But that’s OK.

The only thing that is “all in my head” is my anxiety and I’ve learned to accept that and cope with it, knowing it doesn’t make my autoimmune disease any less real.

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Thinkstock photo by Favor_of_God

I have such a stern face. Every day. And some people are curious why. Why do you look so sad? So angry? So concentrated? The truth is, I am concentrating. I am concentrating so hard, all the time. You could call it RBF, but I’m not resting.

You see, I have a condition that causes me pain. Many people do. My condition, specifically, causes me to have a chronic headache. Me and my headache, actually, just celebrated our fourth anniversary this past February. She and I try so hard to make peace. Or, rather, I’m continuously trying to make peace with her. And the fatigue, that’s just something else. My body feels so heavy compared to the flesh, blood, bones and muscle it’s made of. My feet should not feel so tired, my hands so heavy.

Very few people in my life know about the ways I’m struggling. My family, of course, my best friend, my roommate, my boss and a few coworkers. Part of this is just my quiet, listening persona. Part of this is shame (which I would tell anyone struggling but myself that you do not deserve shame).

This shame leads me to do a lot of things to cover up symptoms. I don’t talk so much about the fact I have a handicap permit so I can make it to my classes. I don’t talk about how much I sleep. I don’t talk about how I spend my spring break going to different specialist appointments instead of going to the beach. I don’t talk about how I would rather spend that whole week in bed because I’m so worn from the simple day-to-day of going to classes, going to get groceries, doing homework and making myself food. I don’t talk about how heavy, how tired, how fatigued, how pained I feel every day. Because somehow I’ve convinced myself that this thing that sets me apart is something to be ashamed of. Logically I know it’s not, but emotionally I’m not there yet.

I am very aware of how my body presents these symptoms. Some of these I can’t really hide all that well. I have gained weight over the past two or three years. I walk slowly now. It wears me out just sitting up straight, just standing. I look visibly shorter because of how heavy I feel just being upright. But some things I can hide. I know if I’m not careful, the pain and fatigue show in my face. This is why I look so stern. Because I am concentrating. For some reason, I have convinced myself that it makes my life a little easier not having to explain things to everyone I interact with, and for everyone else, it allows them to avoid feeling uncomfortable in such a conversation.

So the stern face. Yes, I’m OK. As OK as I get. But I’m getting through it.

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Thinkstock photo via thomasandreas.

April is Sjögren’s Syndrome Awareness Month.

Sjögren’s is an autoimmune disorder that attacks the secretion glands in your body, but Sjögren’s is more than just the occasional dry eye or mouth.

I was diagnosed with Sjögren’s at the age of 22; the same year I was also diagnosed with Hashimoto’s thyroiditis and fibromyalgia. I have been fighting chronic Lyme disease and unspecified hypothyroidism since the age of 18 and chronic migraines since the age of 4. Growing up playing basketball, softball, soccer and field hockey (which I played competitively at the collegiate level and now coach for my high school alma mater), I was always on the move. Suddenly that all came to a halt and now I deal with a different reality.

Sjögren’s is an autoimmune disease, meaning that the body is attacking the healthy cells in the body, causing more issues than not. Not only does it cause severe keratoconjunctivitis sicca (dry eyes) and xerostomia (dry mouth), Sjögren’s can also cause dysfunction in other organs, such as the GI tract, kidneys, blood vessels, liver, lungs, pancreas and nervous system. It can cause chronic myalgia, severe inflammation in joints and fatigue and can also contribute to mental disorders such as anxiety and depression.

For those affected by Sjögren’s, most common over-the-counter lubricating eye drops do not relieve the dry, gritty pain that Sjögren’s causes. Vaginal dryness is also caused by Sjögren’s, which over-the-counter lubricants do not relieve. Not only does vaginal dryness effect one’s sex life because of unpleasant and painful intercourse, but it can also cause regular yeast and/or bacterial infections.

Imagine waking up with heavy chains weighing you down every day, dark circles so dark that even the best high end concealer won’t hide. Most days it’s impossible to get out of bed as a result of the widespread pain. Showering can be exhausting and dry shampoo will become your best friend.

Imagine eyes so dry that your lids stick to your eyes. Eyes so dry you develop ulcers on your eye due the use of contact lenses.

Imagine a mouth so dry that your tongue is covered with a white film and swallowing becomes difficult because of the lack of salvia. No matter the amount of fluids ingested, your mouth consistently stays dry, causing excessive thirst and, in many cases, tooth decay.

Sjögren’s may have changed me, but that is not necessarily a negative thing. I know I am the strongest I have ever been. Being in my 20s and battling chronic illnesses, each day is a struggle. No day is the same, but I keep fighting. Because of Sjögren’s I have learned to become a professional liar. I can fake a smile better than most, and I have mastered hiding the pain behind my eyes. Sjögren’s has yet to stop me; I still work full-time as a phlebotomist and coach field hockey year-round.

This is my life. This is what I have learned to deal with. No amount of sleep will “cure me.” I hurt, my joints swell and something as simple as applying pressure to a gauze pad or tying a tourniquet causes extreme pain to flood over me which has put me in tears at work. Whether I am having a low pain day or a full blown flare-up, I push myself past the point that most people would give up. I keep fighting and I am chronically kicking Sjögren’s ass.

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Lead photos via Sjögren’s Syndrome Foundation Facebook page.

The term “bucket list” isn’t new. Creating a list of things to do before you die has become increasingly popular, with lifestyle blogs and online videos of people’s progress in crossing things off their lists. I have had a bucket list for years, although it had nothing to do with actually kicking the bucket. It’s not a “seize the day” or “live like there is no tomorrow”-type of list. I don’t look at a bucket list in terms of death, but in terms of life.

My bucket list is a written reminder of all of the things I want to do or accomplish in my lifetime. Some of the things on my current 70 item list include:

1.  Float in the Dead Sea
2. See penguins in South Africa
3. Write and publish a book
4. Go to a NFL football game
5. Meet Venus Williams (who has Sjogren’s syndrome, too!)
6. Go on a safari/game drive
7. Ride in a tuk tuk
8. Ride on the Philadelphia Zoo Balloon
9. Eat a beef wellington from a Gordon Ramsey restaurant
10. Be debt-free

Recently my chronic illnesses started to severely impact my quality of life. I decided that there was going to be more of a sense of urgency to the list. Not because I am going to kick the bucket, but because I want to actually fulfill these dreams instead of just looking at them on paper and making excuses for not acting.

Here are the five reasons why my bucket list is important to me:

1. Live For Experiences, Not Materials

The act of creating a bucket list has helped me realize what I value the most. I have realized that experiences are more valuable in my life than material things. I want to cherish the memories of those experiences because those memories will last a lifetime.

2. Prevent Complacency

Living with chronic illness, it is so easy for me to get so consumed by physical symptoms, mental health, doctor appointments, finances, and hospitalizations. Balancing those tasks with every day household chores, work and a social life can be difficult and daunting. It is easy to become content because of the worry of an additional burden or believing there is no sense in fighting. It is stressful and sometimes all-encompassing to deal with these burdens. However, I think complacency can cause serious consequences. My bucket list provides me with a list of things that I want to do and not the things in life that I have to do. They give me motivation to work towards bettering my life and providing me with experiences that I have only dreamed of.

3. Provides a Sense of Hope

I have a lot of goals in my life, mainly that have focused on my career or my perception of success. However, these goals are not my dreams. I think we often work towards our goals in planning for success, but we often disregard our dreams. My bucket list enables me to see my written dreams and start planning for them. Writing these dreams down makes them more real and gives me a sense of both responsibility and accountability. It gives me hope for the future that there is a possibility to fulfill my dreams and something to look forward to. I don’t want to let myself down. As a person with a chronic illness, hope is important and is what motivates me to keep fighting for my quality of life.

4. Keep Me Active

As a person with chronic illness, it is so easy for me to stay in bed all day or not want to do anything because of my physical or mental health symptoms. However, my bucket list helps keep me active. All of the items on my bucket list require some sort of planning, whether it be saving money, making time or just the simple task of making a reservation. Once I succeed and cross another thing off my list, it energizes me to keep going. The items allow me to get out of the house and keep me moving. I can stay engaged with other people and not feel as isolated, as I continue to learn, grow and experience new things.

5. Give a Sense of Control

I am a person who loves control, so dealing with chronic illness is very difficult for me. I sometimes have very little control over my situation and even my body. However, I have control over every item on my bucket list. If it is no longer my dream, I can remove it without feeling guilty. If I come up with something new that peaks my interest, I can add it to the list. I also have control over when and how these items get crossed off. This bucket list is for no one but myself and I have control over every aspect of it.

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