We’ve all heard it… 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 (and I know you do as well) 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:
- Disease activity level.
- Emotional status.
- Time since diagnosis.
- 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 2, 3 and 5 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 1 and 4.
When I’m pleased to hear You don’t Look Sick
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 competent and capable. So the fact that I don’t look like I feel helps me actually feel better!
When I’m unhappy to hear You Don’t Look Sick
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 make me “appear” very ill or become life-threatening. 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.
Factors to Craft your Response to You Don’t Look Sick
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.
My nature is to be analytical and calm, with an ability to easily see another person’s perspective. If you’re into Myers-Briggs, I’m an ENTP. So it works well for me to consider the other persons 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.
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? ( I despise the idea that someone might consider me a victim). 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?
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.
Time Since Diagnosis
If you have been diagnosed for less than 3 years, hearing you don’ t look sick holds a bit more power than if you’ve been diagnosed for longer. So 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.
Your Relationship to 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 You don’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.
My go-to response to You Don’t Look Sick
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:
- I know I don’t look sick, but I truly am.
- 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).
For more ideas on managing your daily life living with an autoimmune disease, check out Tips to Move Through Autoimmune Stages.
MY problem is with doctors, and esp my last rheumatologist here in ND. “Your labs (CBC,metabolic panel, look good), so your therapy is working fine!”
NO, I feel bad sometimes, go through flares bad enough I can’t even swallow water without parotid pain! But they won’t let me use the flare protocol that my CA rheumatologist (short term prednisone pulse). MD:” It will cause osteoporosis and you have osteopenia!” (It is DEXA proven stable on Prolia). So I no longer see a rheumatologist because because there are two at the clinic and the staff informs me the MDs have a non-compete legal clause so a patient cannot see the other one. I look a post on handling bad doctors and medical provider “handcuffs”. BTW, here we have 3 only in my half of the state.
Yes, many people have issues with Drs. Some Drs seem to be more concerned about long-term side effects instead of our choices for quality of life NOW. It is a challenge to find the right Dr and be able to trust that there can be good communication about all trade-offs. Good luck!
My rhmmy has just put me on Cymbalta and I am scared to death to start taking it, (so many side effects, I over-investigate), have you tried this drug? Thanks so much, I appreciate your posts very much!!!
Hi Donna, I know some people that have really been helped by Cymbalta. I did try it and it made my brain feel lopsided…so I did not continue. But many people are helped. I hope you have success, whichever choice you make.
I wish you would have been more sensitive in comparing Sjogren’s to other diseases, knowing that people often have overlapping conditions. I have Sjogren’s, Lupus, and now cancer, that I’m in the middle of treatment for. Your comment: “Even some friends who have known me a long time could not understand a disease that could not be cured and yet didn’t quickly progress to kill you (like cancer). When I read that, I thought, “Now whose being the clueless, insensitive one?” I plan on surviving, thank you.
Ah Kimber…thank you for pointing that out. It is not my intention to be insensitive to those who do have other diseases (such as cancer), only to highlight that the invisible illnesses are not understood. In this specific case, I was thinking of a conversation I actually had with friends where they compared autoimmune disease to cancer. I will rephrase that comment from my post so it does not offend another. And I wish you all good things in combatting your illnesses!
My hair is falling out so bad people are making comments. Twenty years ago I used Rogaine for women and it worked. Is there anything else out there that would work faster or better?
Hello Shelley. I hope you read my most recent post…dedicated to you! I know 10,000 units of Biotin has helped some people, but may not be the solution you are seeking. Please reach out to the patient group on SmartPatients to see if others have used other products that help with hair loss!