Why Community Is So Important If You Have Lupus

“Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble. Likewise, two people lying close together can keep each other warm. But how can one be warm alone? A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken.”


What is lupus community?


I am not a scholar from the NIH, but I would define lupus community as a group of people doing their best to embrace vulnerability and be open and transparent about the physical, emotional, and spiritual peaks and valleys of lupus. A lupus community should be a space to support and encourage each lupus warrior and meet them where they are. To go before, walk beside, and provide a shoulder to lean on. All the while, learning, loving, and growing…together.


If you live with lupus or another chronic illness, you may start to become aware of who you want your close “community” to be. You may start to see a shift in who you gravitate towards, who you reach out to, and who you let your guard down with.


This blog is meant to explore the benefits and obstacles of this process, and delve into why it is so important to find your “community” if you have lupus.


Whether it be a support group, a religious ceremony, a music concert, or football game, experiences of collective assembly affect us. Coming together allows us an opportunity to feel connected to something bigger than ourselves; it is an opportunity to feel joy, meaning, connection, and peace.


Community Resources


Finding community may present as a challenge in these COVID-19 times. Thankfully, there are many online resources to provide you with connection if you are sheltering in place due to the pandemic.



Here are some that I find helpful:


  • LupusConnect™: is an online lupus community where individuals with lupus and their loved ones can engage with others like them to share experiences, find emotional support and discuss practical insights for coping with the daily challenges of the disease. It’s an easy-to-use, online platform that encourages its community members to ask questions, reply to posts, and read about others’ experiences in a safe and comforting community.

  • Hospital Special Surgery: LupusLine® is a free national telephone peer counseling service focusing on one-to-one support for people with lupus and their families. LANtern® (Lupus Asian Network) is a free national support and education program for Asian-Americans with lupus and their families. SLE Workshop is a monthly education and support group for people with lupus, along with their family and friends. Charla de Lupus (Lupus Chat)® is a free national peer health education and support program for Spanish-speaking communities with lupus. Teen and Parent Lupus Chat Groups are monthly in-person chat groups for teens with lupus and their parents.

  • More Than Lupus: MTL offers a monthly In-Person Support Group that lends to an environment of acceptance, and community. We meet the third Saturday of the month, every month. The “Lupus Live” Facebook semi-weekly support chats are an amazing way to foster connections with others in the lupus community from the comfort of your own home or office. Facebook @morethanlupus


The Lupus Diet: Your “Lupus Grocery List”

The normal American grocery list is often filled with items that contain corn syrup, bad fats, artificial ingredients, and additives. This is dangerous and unhealthy for anyone if these items are consumed regularly. However, if you have lupus or another lupus overlap illness, a grocery list packed with these types of items can be especially dangerous.


Disclaimer: If you have certain forms of kidney disease, kidney stones, diabetes, and high blood pressure, please consult your doctor before you change your dietary habits.


Foods rich in Omega-3 Fatty Acids


Certain fats have been proven to be beneficial in lowering cholesterol and levels of inflammation. Omega-3 Fatty Acids have been shown to lower lupus flares and nephritis (kidney lupus). Considering cardiovascular disease is the number 1 cause of death in SLE, consuming items that lower bad cholesterol and improve your heart health is a must!


For your grocery list:


  • Cold-water fish (salmon, mackerel, tuna, sardines, herring)

  • Nuts and seeds (flaxseed, walnuts, chia seeds)

  • Plant oils (flaxseed oil, olive oil)

  • Fortified foods (yogurt, eggs)

  • Tofu


Foods High In Vitamin D


Most people with SLE are deficient in vitamin D. Low levels of vitamin D are associated with more severe disease activity and even antiphospholipid syndrome. Vitamin D (which is really a hormone, not a vitamin) is essential for immune function and is important to keep at a healthy level.



For your grocery list:


  • Oily fish (herring, swordfish)

  • Mushrooms

  • Egg yolks

  • Fortified foods (cow’s milk, orange juice, various breakfast cereals)


High Antioxidant Foods


According to the USDA, antioxidants remove free radicals from the body which can run rampant and actually damage cells, causing serious illness and even cancers.


For your grocery list:


  • Berries

  • Leafy Greens

  • Beans

  • Turmeric

  • Dark Chocolate

  • Pecans


Low-Fat Foods


Typical American diets are full of high amounts of bad fats. This can lead to increased risk of developing heart disease, diabetes, and strokes. Eating healthy low fat foods is imperative in lowering the risk of developing cardiovascular disease and other health complications.


For your grocery list:


  • Low-fat yogurt

  • Low-fat kefir

  • Lean protein (turkey, chicken, lean white fish)


Healthy Carbohydrates


Unfortunately, many of the carbohydrate foods we eat are made from grains that have been stripped of the nutritious bran and germ. Research links a high intake of refined grain foods with higher levels of inflammatory markers in the body. Always read labels (look for items that say 100% whole grain, or whole wheat) and stick to healthier carbohydrate choices!


For your grocery list:


  • Quinoa

  • Brown rice

  • Barley

  • Rye

  • Steel-cut oats

  • 100% whole grain organic wheat bread


Colorful produce


Colorful fruits and vegetables contain valuable plant compounds that may help counter inflammation. Aim for at least five servings each day and the more colorful the better!


For your grocery list:


  • Spinach

  • Collard greens

  • Kale

  • Avocados

  • Blueberries

  • Strawberries

  • Oranges, lemons, and limes!


Calcium-rich products


Steroids and other lupus medications can decrease the absorption of calcium. You need calcium for your bone health, to maintain strong teeth. The body also needs calcium for muscles to move and for nerves to carry messages between the brain and other body parts.


For your grocery list:


  • Low-fat cheese

  • Low-fat yogurt

  • Low-fat milk

  • Sardines

  • Dark leafy greens like spinach, kale, turnips, and collard greens

  • Broccoli

  • Fortified cereals such as Total, Raisin Bran, Corn Flakes (They have a lot of calcium in one serving.)

  • Fortified orange juice

  • Soybeans




  • Garlic (some say to stay away, but not enough medical evidence to support)

  • Turmeric

  • Ginger

  • Rosemary

  • Mint

  • Green Tea


Lupus and Self-Care

What Does Self-Care Mean?


In a nutshell, self-care is any activity that we incorporate into our daily lives that creates balance and fulfills our mental, emotional, and physical needs.


As simple as it seems, it can be very difficult to execute. Why? Though appropriate self-care has been linked to overall improved mood and reduced anxiety, it can be incredibly challenging to find the right balance for you, and for those who are around you. Additionally, it seems even more arduous to overcome the fictitious guilt that taking care of yourself isn’t actually “selfish.”


What Doesn’t Self-Care Mean?


“I pushed myself. I gave of myself. I gave and gave and gave, until I no longer knew who I really was. I was beginning to think I didn’t really exist at all. Any space I took up was only to assess and service someone else’s needs. But, what were my needs? I didn’t seem to know…” – said every person with lupus…ever.


“Self-care is never a selfish act—it is simply good stewardship of the only gift I have, the gift I was put on earth to offer to others.”-Parker Palmer


Knowing what self-care isn’t is even more important than knowing what it is. Self-care does not equate to selfishness. Self-care isn’t vanity, self-righteousness, or narcissism. It isn’t overindulgence either. It is the acknowledgment that if you don’t take care of yourself, you will not be able to take care of others. It is understanding what we need in order to be a healthy functioning human being and take care of ourselves as a whole – so we have the energy, enthusiasm, and empathy to give to those around us.


Here are the basics of self-care:


  • Make a list of things that bring you joy, peace, and centering. It might be taking a walk, a bath, or listening to a daily meditation or guided prayer lesson. Over time try to incorporate the forms of self-care that work best for you into a consistent routine. Get into a rhythm of setting time for appropriate and necessary self-care.

  • Add your self-care activities to your calendar, be vocal about them with family and friends, and be intentional with seeking out opportunities to enhance your self-care routines. Self-care is something that you have to actively plan, it is not going to just happen on its own.

  • Be mindful of why you are choosing to participate in self-care when you are doing it. You might need to repeat a mantra to yourself like this, “I need to do this for myself because my body is worthy of being taken care of.” Take a mental inventory of what you choose to do, how it feels, and what you feel like after.


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