Systemic lupus erythematosus is an autoimmune disease that affects organs throughout the body, including the joints, nervous system, and skin. Many symptoms of lupus are not outwardly visible, even though they can be heavily debilitating. To the point where even basic activities can feel monumentally difficult. Unfortunately, this means that many friends and family members find it difficult to understand what a person with lupus is going through.
They can often say hurtful things without meaning to or just lack empathy for a situation that they just cannot understand. If you want a handy guide for what your friends should never say to you, head over here.
You are not a ‘flake’ or a ‘hypochondriac’ – you have lupus, a complicated autoimmune disease that legitimately makes things difficult. You and your symptoms and experience are valid. If you want some help explaining the limited energy capacity frequently experienced by people with chronic illnesses such as lupus, read about Spoon Theory, here.
Society expects people to have time and energy to maintain friendships that people with lupus just don’t have available all the time. Lupus can be unpredictable and many people who do not have chronic illnesses have trouble understanding the needs of people with lupus. As a result, they drift away, which is devastating, contributing to depression, which can isolate a person with lupus even further. There are a few rays of hope that could break this cycle, however.
There are a lot of things that a person with lupus can’t do, but you already know that. Let’s aim for the positive instead – to “find your own space in this new world” as this article in ABC News puts it. So, here are a few things that you can do with your friends and family to keep the relationships rolling a little more consistently.
The Most Important Rule: Be Flexible!
Lupus is tricky. Each person with lupus has a unique set of symptoms and challenges that they deal with. No fun activity is a one-size-fits all, and it won’t be the perfect choice all of the time. There are good days when any activity is possible. And then there are days for some people with neurological symptoms of lupus might find reading, watching tv shows, talking on the phone, or getting out of bed fatiguing or near impossible while they are experiencing a flare. Flares and symptoms can also be difficult to predict, making concrete, inflexible plans difficult to make.
That is why it is important to have multiple ways for a person with lupus to interact with an activity or with their friends if they can’t attend that day. Backup plans are important, since sometimes flares will happen without warning. Having a computer-related option like a zoom call or a video stream can be an alternative to in-person time. You might need to have a quiet ‘recap’ hangout later or bring back nice souvenirs if that isn’t feasible.
All of the activities that we will talk about here make good backup plans to other activities, but even these options will benefit from everyone involved understanding that sometimes plans have to change.
Everyone should contribute to backup plans to make sure that they work for everyone.
Stay in Contact
A fun activity to do with friends is to have a regular call session with one or more of them. Organized group check-ins like a phone tree can be both fun and fill an important role in your life.
You can do so in your home with whatever you need to stay comfortable. This way, you can account for some variability of symptoms and are more likely to be able to keep the appointment. Having it be an appointment at a regular time keeps you in regular contact and is fun for everyone. Since it’s so difficult to make and keep friends in adulthood, even friends who aren’t dealing with chronic illness will find this appealing. If there are multiple people in the friend group with health issues, then its even better because the whole group can work together to make sure that no one is left lonely and no one is left behind or forgotten. This works even better if it is a local lupus support group.
Anyone who has made an exercise-related new year’s resolution knows that it can be difficult to keep up an exercise routine. For people with lupus, regular light or low-impact exercise can have huge benefits. It’s about consistency and doing the exercise regularly, not the amount of exercise that you do during your session. But it can be even harder to keep up a consistent routine due to pain and fatigue. It’s important, but it can be easy to be discouraged.
Having a friend do the exercise routines with you can make a huge difference. Sharing your exercise experience with another person is very motivating and beneficial for your health! Not only are you doing something together, but you have something to talk about and commiserate with, someone to have an after-exercise snack with, and someone to help if things get too difficult – either by motivation or physical help. It keeps you accountable and this is an activity that can be done at someone’s home, at a gym as a part of a class, or as a walk around the neighborhood – and it benefits everyone’s health, a win-win.
Make Food Together
Eating together with friends has been a bonding activity since the dawn of human civilization… so meal prep is another win-win activity for people with lupus and their friends. It turns out, the diets that are good for lupus are also very healthy and balanced overall. It can be difficult to prepare meals for the week, and even more so for people with lupus, but working together makes it a lot easier.
It can be as simple as just hanging out and eating healthy together. Or one person can bring the ingredients – especially if they have access to a good source of whole foods, while the other prepares meals for the week and stores them in the freezer and refrigerator. Or one person can just be moral support and good company.
Regular potlucks can also be a good way to get together with friends. There are a lot of ways to turn food into a low-impact way to spend time with friends.
Playing Games Online
Online video games can be amazing for people who have trouble getting together in person. Many video games offer something like an outdoor adventure experience along with entertainment. Even the simulation of the outdoors can have psychological benefits.
Not all online games are video games – board games, card games, and other tabletop games can be played online with group chats, online calls, and even creative emulators like Roll 20 and Tabletop Simulator. The wonderful thing about online gaming is that not only can you have some flexibility around your availability, but if you need to stop and bow out, it’s as simple as saying goodbye and disconnecting. No driving needed!
Going Out, But at a Lighter Time
Sometimes, you are up for going outside, maybe to a museum or park, with your friends… but not necessarily doing something major with too many people around. Sometimes, finding a less popular time when a place will be less crowded and fatiguing will make a huge difference.
The same goes for scheduling time at a spa or even a doctor’s appointment. Timing can be all that you need to make going out with a friend doable.
A Lupus Warrior’s Takeaway
There are a lot of misunderstandings that hover around chronic illnesses such as lupus. and sometimes these misunderstandings get in the way of friendships – but there’s always a way around it. These ideas are just the start – start a conversation with your friends to find something that works for you all.
Read more here about the things that you can do with lupus.
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