Isolation and Anxiety: Living with Lupus
Many living with lupus suffer from feelings of anxiety and isolation that comes from the pain, fatigue and even uncertainty that SLE can cause. These feelings of being cut off from others are understandable, but there are also ways to find emotional relief!
Individuals with a chronic disease such as lupus may spend a lot of time isolated from others because of their symptoms or during flares. It is not unusual to decline invitations, or avoid situations where others might be sick, out of an “abundance of caution.” I know this from personal experience – the less control I have of a situation, the more stressed I become.
We should all make mental health our number one priority … or at least a very close second to our physical health. There are ways that we can all learn to cope and manage our ill feelings of isolation, anxiety and even fear in times like this. Often, our fear stems from the unknown or from confusing and conflicting information.
The first step to feeling better may simple be to learn the facts from reliable, up-to-date websites like the Centers for Disease Control and Prevention (CDC) or the World Health Organization (WHO). Find trusted news sources and eliminate some of the other “noise” that is often overly speculative or not accurate.
For the next steps, keep reading to learn how better cope with feelings of isolation and anxiety, no matter what circumstances we may encounter.
Isolation can occur for many reasons: an individual may be sick with a compromised immune system and therefore unable to socialize, a natural disaster can cut individuals off from each other, communities may be asked to limit their activities due to epidemics or an individual may voluntarily cut themselves off from others due to mental health challenges. Age, socio-economic status and even location can also play a role in why an individual may feel alone.
In an article published in 2017 by the American Psychological Association, researchers agreed that “social connection is crucial to human development” and that feeling connected to others is not only emotionally necessary, but physically necessary as well. “Social connection” can impact both “length and quality of life.” Yet despite how important social relationships are, they do not receive the prioritization they should as measures towards good health.
A 2018 study conducted by Cigna found that approximately 50% of Americans feel alone or left out. 40% of the individuals surveyed admitted they do not feel they have meaningful relationships with others and often feel isolated. This is a dramatic increase over past years. While it may be easy to jump to the conclusion that technology and social media are to blame, that may not be the case. This study also found that a person’s work-life balance, the presence of perceived meaningful relationships and overall health may be bigger predictors of feelings of loneliness.
Isolation can also exacerbate feelings of depression and anxiety. While being alone is great sometimes when we need to relax, stay healthy or complete tasks, it can be detrimental to our mental health to remain alone for long periods of time. Though conducted on mice, a 2018 study revealed that 4 weeks of isolation resulted in “significantly increased depression and anxiety-related behaviors.” Researchers in this study attribute the increase in depression and anxiety to a decrease in oxytocin receptors that can occur in the brain after prolonged isolation. Oxytocin is one of the “feel good” neurotransmitters and has long been understood to help induce feelings of love, well-being and social bonding. As receptors for oxytocin decrease, there is less ability to combat feelings of anxiety and depression.
How can individuals fight feelings of loneliness and isolation?
The Cigna study suggests that individuals, who seldom feel lonely and isolated, experience the following:
- Good, solid, meaningful relationships with others: A strong support system can do wonders for feeling more positive and hopeful about life and managing the rough spots when we are “low on spoons.”
- Good work/life balance: It is important to note that work does not always mean working outside of the house. Work/life balance can mean finding that equilibrium between doing chores or tasks and being social and having fun.
- Quality sleep: Good sleep habits can give us the mental strength to get through tough times and combat fatigue. I have personally noticed that when I become chronically sleep-deprived, everything in my life seems worse than it really is, and I have a harder time completing tasks and staying on top of things.
- Being healthy: A good diet that is nutritious, physical activity (whether it be swimming, yoga or stretching) and good mental health are crucial for helping us cope with whatever comes our way.
Since individuals can experience feeling isolated and lonely for a number of reasons, there is no one-size-fits-all approach to fixing that. Also, while it can be easy to pass judgment on others and wonder why a person who is isolated “just doesn’t get out there and socialize”… this can be incredibly difficult for some.
Suggestions for someone who is feeling lonely and isolated and who finds it difficult to socialize may include:
- Considering where the feeling of isolation and loneliness stem from: Keeping a journal to write down thoughts after introspection may prove insightful and invaluable. An individual may not always be consciously aware of why they feel the way they do, but once prompted to write about it, the words and feelings flow.
- Talking with a healthcare professional: An individual may first want to reach out to a trusted healthcare practitioner to discuss their feelings and that they are ready to seek professional intervention. There are many different kinds of therapists who practice many different modalities of therapy who can offer help.
- Joining a support group: While this step may be harder for some than others, finding a support group either in-person or online may help an individual open up with their feelings among those who know first-hand what it is like to feel alone. Not only is this a great way to self-express, it also provides the opportunity to interact with others. A discussion with a healthcare professional or a simple online search may help find local or virtual support groups.
If you know someone who may be feeling alone and isolated, make a point to reach out to them and check to make sure they are okay. That simple connection with another human being may turn their day from a bad one into a hopeful one.
If feelings of isolation are due to illness, natural disaster, or some other situation that is for the most part out of our control, there are ways to learn to manage feelings until the situation changes. Even if stuck at home or with activity severely restricted, there are things that can be done to interact with others and feel part of society:
- Schedule chats with friends online using apps like Skype, Facetime or other video conferencing technologies. This is my own personal favorite! If you really cannot leave the house, it does not mean you cannot visit with friends. Today’s technology offers many ways for individuals to engage from different locations. There are even apps such as Marco Polo that offer ways to record video messages to friends and family asynchronously. Seeing someone you know and love can make you immediately feel less lonely and more connected even if they are not with you in person.
- Chat on the phone. We use our phones for so much these days that we often forget what they were originally intended for. Calling a loved one can bring joy and a much-needed distraction. Just hearing the voice of someone we like to be around can elevate our mood and make us feel connected to the outside world.
- Reframe your thinking from “I’m stuck in here alone” to “I finally have the time to take care of my home and myself!” The Anxiety and Depression Association of America (ADAA) suggests that using any time when you are isolated to complete unfinished tasks, engage in a pleasurable activity or practice self-care can keep you busy and give you a sense of accomplishment. Having a focus or a hobby can help keep you engaged and present.
- Join an online group. There are many online groups on social media platforms such as Facebook. Whether you are a chronic knitter, a budding writer, you love historical romances or Harry Potter, there is probably a group in cyberspace for you. Many of these groups offer daily prompts to help you start projects, groups to workshop your creations and even just engage in lively discussion around a common interest. An added bonus: some of the memes these groups come up with are great!
- Accept that this may be a situation you cannot control and instead focus on controlling what you can! While you may be stuck in the house or are very limited on where you can and can’t go, you can take this time to control what you can. I have started to make it a point to be active for at least 30 minutes a day and have challenged a friend to do so as well. Want to learn some new recipes? Look some up online or go through a cook book you may have stashed away. Thinking of taking up meditation? Now may be a good time to learn how to practice mindfulness and find peace in the moment, even for five minutes at a time.
- If you are not completely stuck in the house and are able, take a walk. I took a walk around the park by my house yesterday and I could feel my mood shift for the better by the time I returned home. Being out in the sun (with my SPF of course) and listening to an audiobook on my phone brought me a sense of peace and a feeling of connection to the outside world.
- When you cannot go someplace, read about it or the people who live there. Just learning about other people, whether fiction or non-fiction, can make us feel a sense of connection to others. If you find it hard to commit to a whole book, find some short stories, a book of essays or even a good magazine to read so you feel less guilty when you decide to put it down for a while to move on to something else.
The key here is to also do things you enjoy! I recently read a quote that said something to the effect of whatever we liked as a child that brought us joy is something we should never lose sight of. If you loved to color as a kid, grab some crayons and one of the new, fancy adult coloring books or even a cute kid’s one. If you loved to help mom cook, bake some brownies. If you loved reading Harry Potter, order a copy online or download one to your e-reader or audiobooks.
Even when unable to get out, you can get services at home that can help you feel connected and cope. Many museums offer virtual online tours to take. Libraries offer books that you can read on your phone, e-reader or laptop. Some travel writers even offer guided tours of famous cities on podcast. A simple online search will unearth opportunities you may never have known existed.
Anxiety and Fear
Many of us experience anxiety and fear on a normal daily basis, let alone during some kind of crisis or emergency. The Anxiety & Depression Association of America estimates that approximately 18% of Americans (or 40 million individuals) suffer from an anxiety disorder every year. Anxiety disorders include:
- Generalized anxiety disorder (GAD): GAD is excessive worry that is experienced daily for at least six months about anything from finances and employment to health and relationships.
- Panic disorder: Individuals with panic disorder experience random yet reoccurring panic attacks and the sudden feeling of intense fear that grows within a matter of minutes.
- Phobia-related disorders: A phobia is an intense, irrational fear of an object or circumstance which may cause panic and even avoidance. These phobias include simple phobias (fear of flying, heights or blood are some simple phobias), social anxiety disorder or social phobia (an intense fear of social situations or speaking in public) and agoraphobia (fear of being outside alone, standing in line or fear of using public transportation are some examples of agoraphobia).
- Separation anxiety disorder: We often think of children when we think of separation anxiety disorder, though it can happen to adults, too. It is an intense fear of being separated from someone with whom we are emotionally attached and worrying that something bad may happen to them
- Selective mutism: Though rare, selective mutism goes beyond a fear of public speaking and actually causes an individual to be unable to speak at all. Selective mutism is often present with other anxiety disorders.
Researchers of a 2017 article note that phobias are the most commonly reported of the anxiety disorders, but that individuals rarely seek treatment. Women are also diagnosed with anxiety disorder 1.5 times more than men.
Symptoms of anxiety may include:
- Rapid heartbeat
- Stiff muscles
- Feeling tired
- Feeling wound-up or on-edge
- The inability to control or stop thoughts, especially scary ones
- Feeling as though in a fog and unable to focus
- Feelings of impending doom
- Shaking or trembling
- Problems falling or staying asleep and waking very early
As someone who has been diagnosed as having both GAD and panic disorder, I can attest to experiencing each and every one of these symptoms – and then some! While I can often pin-point where my anxiety started (a personal health issue, worrying about a loved one, taking a test, speaking in front of a group), I often cannot attribute it to one specific thing. I also often feel anxiety when watching the news, if we are in the midst of some kind of national or international crisis, or if my job and finances are unstable.
How can an individual combat anxiety?
Much like with isolation, the first step for many may be to reflect about their anxiety and write down any feelings about it. The next step would be to speak with someone trusted: a friend or family member or a healthcare practitioner. A good therapist who specializes in anxiety can help an individual develop coping skills during stressful times (often these skills can be as simple as remembering to breathe). There are also great support groups for people who experience anxiety, both online and in-person. I joined an online anxiety support group over 15 years ago and met one of my best friends to this day there.
In some cases, medication may be prescribed to treat anxiety along with cognitive behavioral therapy (CBT). These medications include:
- Antidepressants such as selective serotonin reuptake inhibitors (SSRIs), selective serotonin norepinephrine reuptake inhibitors (SNRIs) and tricyclics.
- Anti-anxiety drugs such as benzodiazepines, though they are not recommended as a first-line treatment.
- Beta-blockers, which are typically used to treat high blood pressure, also help relieve the physical symptoms of anxiety.
- Buspirone (Buspar), an anti-anxiety medication that is not a benzodiazepine, but helps treat anxiety.
There has been some discussion about whether or not cannabis can treat anxiety. Though research is limited, there is anecdotal evidence that it can help some people, sometimes. It is important to speak to your healthcare practitioners about the benefits and risks of using cannabis.
There are other measures an individual can take to help relieve anxiety or just stress in general including:
- Limiting exposure to the news: While watching or reading the news can be a great way to stay informed, it can also be the cause of a lot of undo worry and stress. Some media sources can send a daily email breaking down the biggest news stories of the day in digestible, bite-sized chunks.
- Limiting exposure to social media: Yes, social media platforms can be a great way to stay connected to others, but it can also be a great source of anxiety. Taking apps off of smartphones, setting timers, blocking apps and eliminating notifications can help to wean a person off of scrolling and swiping. Spend time reading, journaling or creating something instead.
- Practicing breathing: Remembering that breathing from the belly, fully and deeply, can almost immediately help alleviate stress. A mindfulness meditation practice or even practicing 4-7-8 (inhale for 4 seconds, hold the breath for 7 seconds, exhale for 8 seconds) can help to focus and regain composure.
- Exercising: Even if you cannot get out and run a marathon, simply stretching in the living room or taking a stroll around the block can help ease anxiety. Limited outdoor activities like walking or jogging – with the appropriate physical (social) distancing – is almost universally accepted, even during “staying at home” orders. Making a daily exercise habit gives cumulative results and will also help manage feelings in the long-run.
- Limiting caffeine, alcohol and tobacco: Though they feel great at first, these substances can be too stimulating on top of already feeling anxious. If they cannot be entirely eliminated, limiting them can help reduce feelings of agitation.
- Getting enough sleep: We have said it before and will say it again; practicing good sleep hygiene and healthy sleep habits are fortifying and will help keep anxiety at bay.
- Eating a healthy diet: Limiting sugar, cutting saturated fats and including more whole grains, fruits and vegetables in the diet can help to feel more at ease.
- Getting out and enjoying life: Spending time doing beloved activities or spending time with beloved people can often be the best way to stimulate feelings of happiness.
Individuals experiencing feelings of isolation and/or anxiety do not need to feel this way forever. There are people out there who are trained and eager to help teach coping skills and treat mental health conditions that may be caused by the stresses of the times in which we live. While sometimes it may take therapy or even prescription medications to bring relief, it often takes only a change in habits, being creative in how we engage with others or learning how to appreciate the simple joys in life. Being patient and realizing that time is often the best healer can also help keep emotions in perspective.
Anxiety disorders. (2018). National Institute of Mental Health. Retrieved March 19, 2020 from https://www.nimh.nih.gov/health/topics/anxiety-disorders/index.shtml
APA public opinion poll – annual meeting 2018. (2018). American Psychiatric Association. Retrieved March 19, 2020 from https://www.psychiatry.org/newsroom/apa-public-opinion-poll-annual-meeting-2018
Bandelow, B., Michaelis, S., & Wedekind, D. (2017). Treatment of anxiety disorders. Dialogues in Clinical Neuroscience, 19(2017), 93-106. Retrieved March 19, 2020 from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5573566/pdf/DialoguesClinNeurosci-19-93.pdf
Facts & statistics. (n.d.). Anxiety and Depression Association of America. Retrieved March 19, 2020 from https://adaa.org/about-adaa/press-room/facts-statistics
Han, R., Kim, Y., Park, E., Kim, J., Ryu, C., Kim, H., Lee, J., Pank, K., Shanyu, C., Kim, H., Back, S., Kim, H., Kim, Y., & Na, H. (2018). Long-term isolation elicits depression and anxiety-related behaviors by reducing oxytocin-induced GABAergic transmission in central amygdala. Frontiers in Molecular Neuroscience, 11(246), 1-12. doi:10.3389/fnmol.2018.00246. Retrieved March 19, 2020 from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6104450/pdf/fnmol-11-00246.pdf
Holt-Lunstad, J., Robles, T., & Sbarra, D. (2017). Advancing social connection as a public health priority in the United States. American Psychologist, 72(6), 517-530. http://dx.doi.org/10.1037/amp0000103. Retrieved March 19, 2020 from https://www.apa.org/pubs/journals/releases/amp-amp0000103.pdf
Loneliness at epidemic levels in America. (n.d.). Cigna. Retrieved March 19, 2020 from https://www.cigna.com/about-us/newsroom/studies-and-reports/loneliness-epidemic-america
Author: Liz Heintz
Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.
All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.
All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.