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  • Writer's pictureSarah Schafer, MD

Communicating With Family and Friends About Sjogren’s

Updated: Nov 8, 2023


Social support is essential for people with Sjogren's, so it's important to help your loved ones understand your condition. This blog post provides tools for talking to friends and family, and for countering misunderstanding and dismissive comments.

Do not expect the people in your life to know much, if anything, about Sjogren's. Despite being a common, serious disease that affects the entire body, a quick internet search often leaves the impression that Sjogren's is a mild dryness disease that's easily managed. This outdated and incorrect view is still widespread, so it's common for people to doubt the serious impact Sjogren's has on your life. While it is understandable for people to be confused, it is important to protect yourself from emotional harm if they are gaslighting you.

Self-compassion and honest communication about the challenges of Sjogren's are crucial for building understanding and support in your relationships, including the one you have with yourself. Learn more on the page, Coping, Communicating, and Gaslighting

Gaslighting


Trivializing or denying your experience, or accusing you of exaggerating or psychologizing symptoms such as fatigue and brain fog, is gaslighting. It can be done to you by other people, or you can do it to yourself. It's important not to gaslight yourself, but to accept your reality with self-compassion and kindness.


Challenges While you're the one living with a serious chronic illness, you’re not the only one impacted by it. Your spouse/partner and other loved ones also suffer loss and grief because they lose you as they knew you. It’s important to acknowledge this. Open the discussion early. Ask about their fears regarding the impact of your illness and the uncertainty it creates. Be prepared to revisit this conversation several times.


Family members often have a limited capacity for emotional or practical support. Despite your best efforts toward clear, empathic communication with your family, some people may respond with judgment and blame. This often comes as a painful surprise, especially at a time when support feels most needed.


Relationship upheaval is typical for people with serious illness. It is especially difficult when someone close to you clearly does not want to understand your illness or support your efforts to take care of yourself. Relationships that were difficult to begin with may become even more painful. Some relationships do not survive the stress of chronic illness. If you are dealing with a close relationship that seems to be faltering, it can be helpful to seek professional support from someone knowledgeable about chronic disease.


While unsupportive family members may eventually shift their stance, the approach of trying to educate them repeatedly after several unsuccessful attempts usually results in unnecessary pain. It is important not to blame yourself for Sjogren’s, but to develop good self-care with an attitude of deep kindness toward yourself. Attempt to keep lines of positive communication open but set boundaries to protect yourself from negativity. In some cases, you may need to create more distance to avoid being attacked/gaslighted.

If you don’t feel supported by those closest to you, being creative about organizing your life, getting support from others, and setting clear boundaries may be your best strategy. Just having one or two people in your life who truly “get it” can be enough. Recognize that some people may be good at practical support, but unavailable emotionally. The reverse may also occur.

Smart Patients can be a good place to get support from other patients. If you would like to get to know people with Sjogren’s in your area, contact the Sjogren’s Foundation for the closest group near you.

Communication Resources and Tips Sjogren's Awareness Resources If you are unsure of a person’s awareness or interest in Sjogren's ask, “I’m not sure how much you know about Sjogren’s, do you want to know more about what’s really going on with me?If they sound receptive, share the following resources with them.

Sjogren’s Foundation’s 2021 Living with Sjogren’s Survey Highlight the graph on the first page that shows that more than half of people with Sjogren's experience 21 or more symptoms. She’s Not a Princess, She Has Sjogren’s (blog post from Dr. Susan Masterson)


If you can, watch these videos with the person so you can talk about the content. What Is Sjogren's? (video from the Sjogren's Foundation)

What it's like to live with Sjogren's. (video from the Sjogren's Foundation)


For in depth, credible information about Sjogren's: Sjogren’s Advocate (this website) The Sjogren’s Foundation (www.sjogrens.org) John’s Hopkins Sjogren’s Center (https://www.hopkinssjogrens.org/)


Communication Tips When someone asks if they can help, be ready with a specific request: stopping by with dinner, running errands, childcare, etc. If you are caught off guard, a good response might be,May I get back to you? I could really use help, but I am feeling too overwhelmed to think about it right now.


State your limitations and needs clearly and without apology. If you are too tired to cook, shop, or clean, state that and request specific help from household members. For example, “I’m not well enough to do housework right now. Could you please vacuum and clean the bathrooms once a week?” as opposed to the more vague, “I need more help with the cleaning.


Many people go into advice giving mode, offering instant remedies such as the latest diet, various medical regimens, healers, etc. This may be motivated by a true desire to help, or it can be a way to distance themselves from your experience. Possible responses:

Thanks for your concern, I am working closely with my doctor on this,

or I appreciate your concern. I need to do this in my own way and in my own time. It would be great if you could support my choices.


Dealing with insensitive and judgmental comments, especially if repeated, is difficult. One strategy is to provide the speaker with an opportunity to consider the hurtfulness of their comments.

Possible response: “Let me understand. Are you saying (repeat hurtful comment)?

The person may back-pedal or give their comment more thought. This does not always work.


Zingers: Responding to Judgmental and Unhelpful Comments

It is common to feel blindsided and shut down when someone makes insensitive or painful comments about how you are dealing with your illness. Sometimes you can anticipate the types of comments you might hear and prepare in advance. For example, you may already know that someone thinks that a particular diet or health practice is a cure-all. Memorize this default response

When inappropriate comments come out of the blue, simply responding by saying, "So, tell me what you know about Sjogren’s often works to great effect. "So, tell me what you know about Sjogren's" usually stops people in their tracks because they usually know nothing about the disease, and are rarely interested in learning. If they do express interest, you can offer to discuss any questions after they have read or watched the educational material you send them. You can use the Sjogren's Awareness Resources (above) for starters.

More Specific Responses

If you just stopped taking all those medications, you would be fine.

What I’m hearing you say is you think Sjogren’s is not serious enough to require medication.


If you would exercise/lose weight/eat paleo, etc. you would be fine.

Do you think if I (fill in the blank) my Sjogren’s will go away?”


For comments that insinuate you are not trying hard enough, I’m hearing you say that if I tried harder that I could do _______ (fill in activity) and still manage my Sjogren’s symptoms.


If your responses do not work, set boundaries. It hurts to hear you say this. I am doing my best. Please keep these comments to yourself.


Communication with clinicians and countering medical gaslighting is addressed in the SELF-ADVOCACY and RESOURCES sections.






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