Acceptance, self-compassion, and communication are important for coping with Sjogren’s and countering gaslighting from family, friends, and yourself. This page provides resources and practical tips and strategies for improving your overall relationship with yourself and others.
The challenges of supporting & caring for yourself when you have Sjogren's
Supporting and caring for yourself when you have Sjogren’s is uniquely challenging because Sjogren’s is invisible, there’s little awareness and knowledge of the disease, and MYTHS ABOUT SJOGREN’S remain widespread. It is especially difficult that Sjogren’s is typically diagnosed in the prime of life (40s and 50s), when family responsibilities and careers are at their peak and Sjogren’s symptoms, which have been brewing for years, finally get disabling enough that they can no longer be overridden or ignored.
Living with Sjogren's means facing invisibility, lack of awareness and information, and myths about the disease. This makes your reality seem like a lie or an exaggeration to others, disconnects you from your relationships, and can lead to dismissal, doubt, and gaslighting. You lose your life as you know it, suffer loss and grief, and are frequently invalidated.
“Gaslighting is a form of psychological abuse in which a person or group causes someone to question their own sanity, memories, or perception of reality. People who experience gaslighting may feel confused, anxious, or as though they cannot trust themselves.”
Trivializing or denying your experience, or accusing you of exaggerating or psychologizing symptoms, such as fatigue and brain fog, is gaslighting. Other people can gaslight you, which can lead to you gaslighting yourself, especially if you are coping by denying your reality.
It's important not to gaslight yourself.
Instead, accept your reality with self-compassion and kindness.
Accepting something does not mean you have to like it.
The first step to coping with Sjogren's is to be honest with yourself and practice self-compassion.
Self-compassion is not selfish; it is necessary to successfully navigating your life with chronic illness.
"If you are like me, you may have a hard time accepting the limitations caused by Sjogren’s. I spent years gaslighting myself because I was unwilling to believe that I could be this disabled and sick. I was devastated that I could no longer work or fully care for my children. I beat myself emotionally for not being able to function better during my peak career and parenting years.
Because I was not realistic about how sick I was, I would push myself to the limit and beyond, only to end up severely flared for days or even weeks. Pushing myself also reinforced unrealistic expectations from friends and family.
After repeating this pattern many times, I finally started to accept and honor my limits with self-compassion. The book, Radical Acceptance, by psychologist Tara Brach, PhD helped me let go of the unnecessary suffering I was creating from negative self-talk.
It was a relief to finally understand that being sick is not a character flaw, and that I couldn't overcome my disabling symptoms through willpower.
Having self-compassion helped me realize that the limited support and understanding from family and friends was not a reflection of my worth,
but a nearly universal experience for anyone with severe chronic illness."
~ Sarah Schafer, MD and Sjogren's patient
If you're struggling with self-compassion and don't know where to start, please visit Dr. Kristin Neff’s website. Dr. Neff is renowned for her research and teaching about self-compassion.
Skillful communication with yourself and others is important.
Skillful communication is key to nourishing the relationships that matter the most to you, including the one you have with yourself. The quality of the relationship you have with yourself, your family and friends, and your clinicians is important to overall health.
The Sjogren's community on Smart Patients is a safe place to start connecting with other people with Sjogren's who understand what you are going through and can provide support.
How to communicate with yourself when you have Sjogren's
Part of skillfully communicating what it’s like to live with Sjogren’s is being honest with yourself and believing your own experience. The articles listed at the end of this section show why being honest with yourself and believing your own experience is so important. Sjogren’s can leave you grasping to find words that describe your experience. Reading other people’s experiences of Sjogren’s may help.
Gaslighting yourself makes it even harder to effectively communicate your reality. Self-compassion and practical approaches are both essential to living with Sjogren’s. Don’t gaslight yourself by downplaying your symptoms or telling yourself that you just need to try harder. Instead, be honest and realistic with yourself and others. Accept that fatigue, pain, and other symptoms will leave you with fewer physical resources to cope with the big things. This is simply the way it is.
Know, accept, and do what you can within your limits.
Respect your need for extra rest. Pace yourself realistically, prioritizing your activities. Many people feel better and get more done overall when they schedule a daily rest.
Don’t beat yourself up for not being able to do what a healthy person can do.
State your limits firmly, without apology. Spending a lot of time apologizing and explaining can backfire and people may become resentful.
Learn to read the tea leaves and avoid unnecessary suffering.
Learn your warning signs and triggers that leave you feeling depleted or send you into a symptom flare. Warning signs might be physical symptoms, emotional states or a “felt sense” that you are being depleted.
Avoid environmental triggers whenever possible. People with Sjogren’s often have reactions to fragrances, UV light, and noisy environments.
Infections, even mild ones, may cause symptom flares, so be sure to avoid people with colds and other infections.
Protect yourself from exposure to flu, RSV, and Covid by wearing an N95 mask in indoor settings outside your household.
Covid may cause a permanent reduction in your health.
Long Covid impacts 1 in 7 people in the US.
Bear witness to the losses in your life.
The Sjogren's community on Smart Patients is a safe place to connect with people who understand what you are going through, can bear witness to your losses, and provide support. The articles listed below can also help validate your experiences, cultivate self-compassion, and leave you feeling less alone. Sharing these articles with family and friends can help them understand what you are going through.
Articles to read and share...
Dis oughta know me, uhhh?!? - Dr. Rebecca (Bexi) Lobo's account of how she discovered she had dysautonomia, what it's like to live with it, and what dysautonomia is. Dysautonomia is an often overlooked cause of fatigue, lightheadedness, "brain fog" and gastrointestinal symptoms in Sjogren's.
Getting a diagnosis during COVID- by Therese Pope, Sjogren's patient
How to communicate with family and friends about Sjogren’s
Support from family and friends can be one of the most important resources for you to draw on when dealing with Sjogren’s. Creating strategies for support and self-care can help you get through difficult times.
In spite of 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 important not to blame yourself for the illness, which invites others to do the same. Attempt to keep lines of positive communication open but set boundaries to protect yourself from negativity.
For specific detailed tips and resources, please read:
Get practical support
Practical support makes it easier to manage your health. Most people with Sjogren’s can participate in a number of activities when someone takes over the more challenging tasks. It takes some trial and error to learn what you can do without compromising your health. Being a good observer of your unique patterns will help you plan the types of activities and pacing that works for you.
Many people are happy to help but might not ask or may assume you are doing fine if you have a partner or other adults at home. It can be difficult to ask for help, especially if you are the “can do” type of person. Sometimes support arrives from people you don’t expect to come through, while those you think of as close friends or family may not provide support. Providing support can be beneficial to both givers and recipients.
Advance preparation can pay huge dividends and reduce stress if you find yourself needing help. Let people know ahead of time that you may need to ask them for help because of your health, and what that might look like. This might be running errands, childcare, walking your dog, bringing a meal, or just hanging out and watching a movie. Knowing that they are willing and able to do makes it easier to ask when you are at your most vulnerable.
Unfortunately, even with careful planning, the unpredictable nature of Sjogren’s will sometimes knock you down when you don’t expect it. It is always good to have a backup plan and soup in your freezer.