Societal Expectations and Lupus

People with lupus often find it hard to live up to many social norms and expectations, which often emphasize ‘sucking it up.’

Societal expectations are the rules that we make in order to safely navigate the complex social world of our lives and our cultures. Each culture has different social rules and expectations, and these can change over time. In general, however, for many people with lupus – and other painful invisible, difficult to diagnose or understand diseases – these expectations can weigh them down in ways that are unfair.

Lupus is also affected by the social determinants of health: economic stability, education, health access, neighborhood, and the social structure surrounding a person. However, the social determinants of health also affect expectations placed on a person. Especially those related to work and the acceptability of “getting help.”

Here are a few expectations that you might recognize:

• Supporting others monetarily, physically, and emotionally is a common social expectation. It can be difficult to support others while dealing with some of the symptoms of lupus. And doesn’t give people with lupus might find they aren’t left much room to take care of themselves.
• At work and at school, people are expected to be on time, notify people if they are too sick to work, dress neatly and appropriately, and keep a positive attitude. However, lupus flares can be unpredictable, fatigue and depression can make calling in very difficult, and the stress of being chronically ill and in pain (as well as getting poor-quality sleep) can put a dampener on attitude. Some workplaces also have issues with accommodating people with lupus. Read more about working and lupus here.
• Pain medication can be essential for people with lupus to get through life, but it is also stigmatized by society.  People with lupus experience pain in their joints and in other areas in the body, and people should not be forced to suffer through painful days when there are alternatives.
• Having the energy to spend time with friends and family. Lupus can drain that energy away and make it physically – and emotionally – difficult to devote resources to other people.
• Highly restrictive diets (including gluten free or AIP diets) can cause friction for some people with lupus, since they cannot or will not eat certain offered foods. However, fortunately, dietary restrictions are generally accepted by society, and many feel that not respecting someone’s dietary restrictions is rude (so, for once, social expectations working for the benefit of people with lupus!)

Women in particular are both more likely to develop lupus and to have enormous societal expectations placed upon them.

It can be hard to manage these expectations, and others, but it is possible to live a “normal” life with lupus. Here are a few tips and tricks to help you navigate through social expectations and make the most of things.

Tip 1: Forgive Yourself

Cut yourself some slack. There is a societal expectation to “suck it up“  and muddle through the challenges of illness in silence, and that can make many people with lupus feel like they are weak, have no agency, or are “doing it wrong.” But look at it this way: You are going through several ordeals at once. You are not ‘bad’ for having trouble meeting an expectation.

Lupus affects almost every organ system, including the brain and nervous system, which can greatly affect everyday life. Disability payments and other financial supports are a valid way to take care of yourself and your family. You can read about affording medications here. You are doing the best that you can with the hand you have been dealt, and society should be adjusting its expectations to fit you.

You deserve support and appreciation… and that includes from yourself.

The “Spoon Theory” is a useful method to explain this idea to others, and you can read more about it here.

Tip 2: Get a Therapist or Social Worker.

Therapists and social workers have a stigma attached to them. However, “getting help” is becoming more normalized by the year and is a very good idea for people with lupus. A professional, trained, outside party can help give you a neutral perspective on life. It can get you out of your own head a little. They can also give you advice and assistance in managing these expectations, both those placed on you by others, and those placed on you by yourself. They can also help you manage depression, anxiety, and other mental health consequences of lupus and its symptoms.

Also, PTSD can make it difficult to manage societal expectations, and is also misunderstood. People with lupus often have PTSD from one or multiple causes. PTSD episodes and lupus flares can be interrelated, cause issues with everyday life, and then make it more likely for an episode or a flare to occur. Managing societal expectations can help.

Tip 3: Prioritize Self-Care

Taking time for self-management is important. It may feel like “cheating” or “selfish” to let an expectation or responsibility fall short, but in the end, if you do not eat properly, sleep enough, drink enough water, take your medications, or get enough physical activity, you will get sicker and be less able to meet those expectations. If you take care of yourself, you’ll be better able to meet those expectations: For example, getting adequate physical activity can somewhat lift depression for people with lupus.

It’s all right to let low priority expectations fall by the wayside a little as you focus on the responsibilities or expectations that matter (such as your children, pets, and work,) and build up your strength. Supportive friends, family members, or co-workers can help you temporarily while you heal, and you might also be better able to manage those expectations once you’ve restored yourself a little more. Medical equipment can also help, by giving you the tools that you need to take care of yourself.

Tip 4: Stay Positive and Mindful

Stay positive, stay motivated, stay focused. Positivity is a known stress-management tool, and positive affirmations can help make positivity easier. You force yourself to bring your positive traits to the foreground of your mind, and to see the positive parts of your day. This can help control some of the negative feelings of anger and frustration associated with living with lupus.

Mindfulness-based techniques are known to both take care of the mental challenges of lupus and the physical challenges of lupus. However, mindfulness and other meditation techniques (including low-impact yoga) can also help with the emotional impacts of lupus and help manage your expectations of yourself. In some cases, they can even help you meet those expectations by helping get thoughts in order.

Tip 5: Use Social Media Carefully

Social media can be a powerful tool for socializing, support groups, and even for tracking health. You can read more about that here. However, social media can also be a toxic pit of expectations. A way for people to put unfair pressure on you to behave a certain way, do certain things, or believe certain things. Use it with caution and in moderation and try to find alternative support groups for your needs.

Tip 6: Avoid Alcohol

Alcohol can interact with lupus medications and can potentially make lupus worse by allowing autoimmune cells into more areas of the body. It also contributes to gout, brain fog, fatigue, and immune system regulation. There is a cultural expectation to drink in many places, and some people feel that it “dulls the edge” of their problems. But it generally leaves you worse off than when you started. Any health benefits – such as a slightly reduced risk of heart attack and stroke – are minor in comparison to its downsides. Drink in moderation, if at all, and stand strong if someone tries to coerce you into drinking socially.