What are the risks of in vitro fertilization for people with lupus?

IVF and lupus have a complicated relationship.

Hormonal changes in the body are notorious for causing problems for people with autoimmune diseases like systemic lupus (SLE.) This is why some people with lupus are careful about what contraceptives they use. Spikes in hormone levels from, say, a birth control pill may induce symptom flares. Thrombosis (life-threatening blood clots) has also been reported. You can read more about clot risks for people with lupus here.

IVF has been researched for the risk for causing disease flares because of its use of hormone therapy.

37 women with lupus (SLE) or antiphospholipid syndrome participated in a 2017 study published in the Journal of Rheumatology. 97 IVF procedures occurred during the study. The procedures resulted in 27 pregnancies. From those pregnancies, there were:

• 23 live births from 26 neonates (3 twin pregnancies)
• 2 miscarriages
• 2 terminations for trisomy 13 and 21

6 spontaneous pregnancies occurred during follow-up. In total, 26 of the 37 women delivered at least 1 healthy child.

 

Exploring the risks of IVF

The researchers noted that “complications occurred in or after 8 IVF cycles.” During the pregnancies, 4 people experienced lupus flares and 4 others experienced major thrombotic events. Also reported were 6 mild SLE and 1 deep-vein thrombosis. 

37% of the infants were pre-term (early) births, 15% had HELLP, and 7% had preeclampsia, a serious condition that can hurt both mother and child.

Rheumatology Advisor highlighted two challenges of this study:

• A relatively small sample size
• 15 procedures used Oocyte donation cycles. This type of procedure involved a milder stimulation protocol

A separate 2000 study found that neonatal lupus, a form of lupus that appears in newborns, was also sometimes reported.

IVF, pregnancy, & lupus

There is always a risk of complications with pregnancy, and lupus can add to those risks. Check out this article on pregnancy and lupus to learn more about those risks.

IVF success rates are good, but people with lupus have a slightly higher risk of complications according to the research. However, people with lupus can reduce this risk by sticking to their treatment plan.

In a study published in 2013, the researchers ruled that several symptom flares were not linked to IVF therapy at all. Failure to adhere to medication treatment plans and prescribed diets caused the symptom flares and thrombosis, according to the clinicians and researchers.

If you choose to undergo IVF, be sure to add all clinicians to your lupus and health treatment team. It will be important to continue consistently monitoring your health. You should also discuss any personal risks with your lupus treatment team.

A few years ago, Christine Miserandino wrote a post on the blog “But you Don’t Look Sick” called “The Spoon Theory”. Using spoons from a diner, she explained to a close friend what it’s like to have lupus or other chronic illnesses. You can read the post for yourself here.

Let’s dive into the key takeaways of the spoon theory of energy management:

• You start out with only so many “spoons” per day, and have to manage them carefully.
• It’s the little things that cost spoons, like standing up, reaching, picking out clothes, and so on that really drain the day. Many people, even people who understand the idea of limited energy, don’t realize that these little things cost spoons at all.
• Some activities and sub-activities cost a good amount of spoons, but are so necessary that people with lupus have to do them anyway and base other activities around them.
• Using more spoons than what you have means that you are borrowing against your spoons the next day and your health.

Note: If the terminology of “spoon”s is throwing you off, try thinking of them as “energy points” or something similar. Coins, puzzle pieces, or pieces from a sheet of paper may work too — whatever works for you and your friends.

Tips for Managing Energy

#Lupuswarriors are in the trenches every day, trying to manage their energy and take care of yourself and others. You have to be both warriors, fighting through the day, and generals, planning the whole campaign along with your lupus treatment team. It’s not easy, but you can do it – you do it every day.

A lot of how you manage lupus and your energy levels is unique to you, and each #Lupuswarrior has their own battle strategies.  There are a few basic things that you can do, however, to help maximize your spoons.

Take Medications as Prescribed

Lupus medications come with a variety of unpleasant side effects and can seem like they aren’t worth the hassle. Some of these side effects can even cost you spoons. However, the prescriptions that make up a lupus treatment plan can be crucial to decrease organ involvement and maintain long-term health. Not taking medications will lead to less spoons in the future, which means fewer spoons to use on things that you need to do, and more flare ups.

Don’t Skip Meals

Your body needs energy, and many lupus medications need to be taken with food. However, nausea, pain, fatigue, and the gastointestinal problems that can come with lupus may get in the way of your daily meals. You may be tempted to skip a meal, but you shouldn’t – you will be paying for it later. Keep simple foods on hand like soups and small snacks, and try to keep some energy available to eat. 

Take Vitamins and Minerals

Eating is important, but just as important is making sure that you eat right. Giving your body all the nutrition it needs (and avoiding foods such as garlic that can lead to flares) is important to maximizing your health and energy. However, #Lupuswarriors can find it difficult to eat a full set of nutritionally balanced meals. Taking multivitamins, calcium tablets, and vitamin D supplements can ensure that you get what you need even when you don’t have the spoons for eating more than the basics.

Don’t Overdo It

When you’re having a good day, it’s tempting to try and take on the world. Symptoms come and go, or medications take effect. Or, you find a great new strategy that makes you feel like you can finally do all of the things on your to-do list. Remember to take things one step at a time. It’s not easy to hold yourself back, but if you do too much at once, you could set yourself back. Be patient, take breaks, and go easy on yourself – you’ll get to where you want to go if you pace yourself.

Plan Ahead

#Lupuswarriors are also generals. Plan out your day as if you were fighting a war – what do you have to do that day? What do you want to do today? How are you feeling? What’s the weather like? How much do you think you can do today? When can you take breaks? Which tasks truly must be accomplished, and what can wait until tomorrow? The answer to each of these questions will be different for each person with lupus day-to-day, and how you plan this out may take on different forms. Try a flowchart or a scheduler for easy guidance, and keep an eye on your condition throughout the day to change the plan as needed.

Let Other People Help

Delegation is an important part of any #Lupuswarriors arsenal. Learning to ask for help is an important part of your care journey. If you need something to get done, but you don’t have the energy to do it in whole, do what you can and have someone else do part of it for you. Or all of it. The key to getting support is asking.

Taking Care of You

Most of all, though, have reasonable expectations for yourself, get through your day, and do what you need to do.

Reading blogs and posts by other people with lupus and other chronic illnesses can help keep things in perspective and offers a morale boost.

The But You Don’t Look Sick blog has inspiring and insightful posts by guest posters with many different chronic diseases. “Spooniechat” is a twitter chat for people with chronic illnesses, and is a great place to share spoon-conserving advice.

If you want to learn more about fatigue and managing your energy with lupus, our article here discusses it in-depth.

What is self-management?

Self-management is the continuous engagement in your illness, by actively participating in the understanding of the illness, the adherence to treatment plans, and the honest communication of symptoms to your healthcare team.

In an article in Healio, Linda Grinnell-Merrick, MS, NP-BC, the lead nurse practitioner in the division of allergy, immunology and rheumatology at the University of Rochester Medical Center described it thusly: “Self-management in lupus is a combination of information, guidance and encouragement.” She went on to explain that self-management of lupus is a team effort. Healthcare professionals and educators have to reach out to people with lupus, provide resources, and work together to figure out the best outcome.

However, this is easier said than done. Professionals are hard-working, stressed, and sleep deprived, and each person with lupus is unique. This means both unique strengths – but also unique challenges that make self-management difficult. Some of these challenges could even be considered outright barriers!

Barriers to Self-Management of Lupus

Lupus self-management is by no means a simple task! A person’s financial, family, housing, and work situation can all interfere with their lupus and self-management. For example:

• The home environment may be stressful, chaotic, or physically difficult to navigate (such as staircases). It may be very difficult to prevent flares, or potentially, to make it out the door to a doctor’s appointment.
• The work environment may be stressful or dangerous. Even when someone is physically and mentally capable of doing their job. They may be exposed to stressful situations or even hazardous chemicals that might increase their risks of flare. Quitting is rarely an option – or desired.
• The neighborhood that a person lives in may not be safe or conducive to walking or exercise.
• A person with lupus might not have the money to afford appropriate care, even with insurance… or, they might not be able to afford to lose time from work. They may need to decide between doctors’ visits, medicine, rent, food, or utilities for the month – and this can get even more complicated when children or family is involved.
• There may be a genetic component to lupus that makes families more susceptible to the disease or to other autoimmune diseases. If multiple other members of the family have a chronic illness, figuring out who has the time and energy to assist with certain medical-related tasks.

Sometimes, the medication itself can be a barrier. For example, commonly used corticosteroids cause their own serious and debilitating side effects.

 

Other, more subtle barriers include:

• Less, or no, access to physical or mental health professionals who believe or respect the patient.
• Less convenient or easy access to the appropriate specialized professionals.
• Not having access – or being allergic or sensitive – to fresh and healthy food.
• Being treated poorly overall based on race, gender, or disability status.

How Doctors Can Help?

Health professionals can help people with lupus self-manage through support and education. In fact, about 25% of a physician’s office time is spent educating.

They need to have resources handy or ready to link, and be ready to answer questions and educate people. They need to be able to be aware of the person’s situation and body reactions, and be able to tailor treatment accordingly. The keys to doing this effectively are keeping up to date on research and advances, and communicating effectively with patients and other professionals.

Primarily, health professionals help communicate:

• the symptoms of a flare, and potential flare triggers.
• the side effects of medications and possible interactions with other treatments.
• the components of a healthy lifestyle including:
  • diet
  • exercise
  • limiting smoking and alcohol consumption.
• Family planning and pregnancy resources, an often-neglected aspect of lifestyle treatment.
• What each professional on their team can do, and what they are knowledgeable about.

A great way to do this is to utilize social media. It allows them to communicate in real time and link high-quality resources. Embracing social media can be a great way for professionals and lupus patients to connect (though, they should always be careful, read more about social media and lupus here!)

Professionals also help by believing people with lupus and taking them seriously. Modern medicine is about treating people with respect – a patient advocate can help with this, though you can also be your own advocate with preparation. You can read more about it, here.

A Lupus Warrior’s Takeaway

A big part of self-management is belief in yourself – it’s a self-fulfilling prophesy! Thus, when you are confident in your ability to take care of yourself, it actually does get easier. This is called “Self-efficacy theory,” and it has been researched. So, find ways to make yourself confident. Create plans, get the education that you need, ask questions and advocate for yourself… and don’t let other people drag you down. When you set yourself up to succeed, a lot of barriers go down.

According to a survey by the Lupus Foundation of America, 57% of respondents felt unsatisfied with their health professionals. They did not provide enough information to their patients. Overall, people find health professionals not as accessible and harder to communicate with.

There are three ways to handle this:

1. Encourage healthcare professionals to reach out and communicate better (and give them less stressful schedules.)
2. Provide a link to health educators, so that the patient can get focused attention and the relevant resources.
3. Empower patients to be able to find some of these resources on their own.

As a person with lupus, take advantage of the resources that are available to you. Read things thoroughly, and see if you can find videos and classes on the disease. Studies on the self-help resources revealed that self-help resources were tied to improvements in both physical and mental health.

So, where do you find the resources you need to do this? Well, right here is a good start!

Resources for Lupus Warriors

LupusCorner has many informative articles for people with lupus, caregivers, professionals, and the general public. You can check out our full article list here.

Support groups and networking with other people with lupus can be a big help, too – our app has forums and questionnaires that may be valuable to you. Find it here.

How to Address Key Points

There are a few misunderstandings and frustrations that come up more than others – here’s a guide to how to address them and explain them to your family and friends.

Not Looking Sick

Systemic lupus erythematosus is an autoimmune disease – this means that the body is attacking itself. The symptoms can be visible, such as malar rashes or lesions in cutaneous lupus. However, most of the time, the immune system is attacking the inside of the body: The kidneys, joints, blood vessels, heart, nerves, gut, even the brain – any organ can be affected, and a laundry list of symptoms can come from it. Many of these symptoms are only known to the person with lupus. However, the pain and symptoms are real and can greatly hinder the lives of people with lupus – just as real as any other form of arthritis, back pain, or internal disease (like cancer.) 

People with lupus also can often develop neuropsychiatric diseases, which are caused by the damage of lupus inflammation, the stress of dealing with lupus, and the frustration of being misunderstood. Another invisible symptom of lupus can be memory troubles, which is caused both by inflammation of lupus and the exhaustion that lupus causes. However, these troubles are very real, and creates a symptom experienced by nearly 60% of people with lupus sometimes called brain fog. Taking care of lupus and reducing inflammation can help clear the fog.

With those ailments, you can’t always tell that a person is ill, but their life is heavily affected. It is the same thing with lupus.

Medications and Chronic Illness

People with lupus will always have lupus, since there is no cure yet. Symptoms can come and go because the immune system is effected by and reacts to things that occur in the outside world or external substances that enter the body such as foods or allergens like pollen. A sudden increase of symptoms is called a flare and flares can last from days to even years. Though the flare might go down, and a person with lupus might experience a period of time without apparent symptoms, it is always there in their body. 

Medications make it easier to stop a flare-in-progress and, also, to prevent it from starting, which helps people with lupus even when these medications have serious side effects – including weight gain, which is a notoriously difficult side effect to shake off due to the corticosteroids changing how the body processes and stores energy from food. Another such medication is immunosuppressive drugs. While these can help to stop symptoms of lupus, these drugs also leave people with lupus vulnerable to infection. 

The medications are worth it because not having flares gives the body needed time to heal from the damage of lupus, which may, in turn, make the body less vulnerable to certain flare triggers.

Weight and Diet

People with lupus already get a great deal of advice from their doctors, they don’t need more. In the end, people with lupus are on the front lines of their disease. They are the ones most aware of their situation and what makes them feel good, what makes them feel bad, what causes flares, and what they are actually able to do to help themselves. Due to pain, it can be difficult to exercise and due to flare triggers and food availability, it can be difficult to keep to a proper diet. Most people with lupus are in the process of figuring out how to manage their disease. Nagging or unasked-for recommendations are stressful, annoying, and it is also very likely that they have tried that method already. 

It’s much better to be supportive – help with cooking, cleaning and exercise, be encouraging, and be a good listening ear. These can be much more effective than advice.

What is Fatigue

Fatigue is a feeling of tiredness and a lack of energy, and it has many different causes. In lupus, there are three main reasons for fatigue:

The body is attacking its own cells, so it is expending energy on a misguided fight against itself, as well as on healing the damage. That takes away energy that a person might otherwise use for other activities.

Worrying about lupus, and the stress from having to deal with the pain and other symptoms of lupus (including not being believed by doctors or family!) uses up energy and can be exhausting on its own. Managing lupus through medications and other strategies and having a supportive and understanding family can stop this particular drain on their energy.

Everything is literally more difficult to do. Joints get stiff and are harder to move, blood vessels get inflamed and the heart has to work harder to get the same result, muscles and other organs are inflamed and not able to operate at full efficiency. Of particular note, the brain and nervous system are affected by lupus and sometimes nerve signals have to travel through gunked up areas of inflammation or take alternate, longer routes entirely. All of the small additional difficulties and efforts required add up.

The exhaustion that lupus brings is much like how someone feels during a fever – lethargic and miserable. It isn’t laziness if someone with lupus cannot get out of bed that day – there are just a lot more invisible tasks that their body had to add to the checklist before getting up. Though they may look ‘healthy,’ many things are happening inside them and sometimes a person with lupus has to let certain tasks, even important ones, fall to the wayside in favor of essential tasks like eating, self-care, or taking care of a dependent. Even with prioritizing, people with lupus sometimes have to overextend their reserves and replenish those reserves from tomorrow’s energy. 

Spoon theory was designed as a way to help people understand, visually, what is happening with the energy levels of a person with lupus. You can read more about it here. 

Medication and proper treatment can help with fatigue, and supportive family members can take some of the load off. Fatigue can also fluctuate with the seasons. 

Why You Can’t Go Out and Do Things

People with lupus want to spend time with their families and friends. However, a lot of activities can make lupus worse, or are difficult to do with lupus symptoms like pain, fatigue, or depression. Because people with lupus have to be careful to avoid getting seriously ill or hurt, they often cannot do certain activities with other people.

People with lupus can go to school and work, but even with mild symptoms, seemingly ordinary activities become difficult. People with lupus have to learn their limits and having people in their lives who encourage them to push beyond those limits risk causing harm. Read more here about searching for jobs and lupus.

How They Can Be Helpful

A person with lupus has to push through each moment just to get to the end of the day. Taking some of the load off of a person with lupus can have a big impact on any one of those moments. Carrying groceries, doing some of the housework, keeping an eye on temperature, keeping records, assisting with care – all of these can be a big help take some of the stress out of everyday life for people with lupus.

Stress is invisible, but it has an enormous effect on the body. Managing and reducing stress is an important part of treating lupus, almost as important as medications. However, both stress management and medications are important – one without the other does not meet the needs of people with lupus.

However, potential helpers should ask first – help without being asked or asking seems nice but can sometimes be harmful, since they may not help with the right thing in the right way.

Supportive family and friends are vital to getting the best care and helping a person with lupus open a dialog with their doctor that allows them both to make the best decisions for their lupus. People can also help the entire lupus community by taking a stand and speaking up as advocates for people with lupus.

Take care of your skin and the microbes on it, and it will take care of you.

What If They Don’t Understand?

Some people just will not understand no matter how much you explain it to them, unfortunately. At this point, just leave a pamphlet on lupus out and don’t spend any more energy on it. You don’t have enough to spare. Forgive them for being unable to understand and forgive yourself – because it’s not your fault. You have done your best, and it’s their turn to meet you halfway in understanding.

For Lupus Warriors, trusting your instincts is the way to go.

You know the early warning signs of your flares. You know your triggers. And,  you know when something doesn’t feel right with your body. 

Lab tests measure your blood chemistry and can tell you what is happening in your body. Physical signs, such as the malar rash, are recognizable symptoms from the outside. However, your lived experience is still an important tool for you and your lupus treatment team.

Personal experiences are collected by a range of standardized surveys. These surveys, known as Patient-Reported Outcomes Measures (PROs or PROMs) can cover a range of topics including:

• mental health
• quality of life
• disease impact
• symptom assessment
• financial wellbeing

You can read more about them, here.

PROs are also used for other difficult to quantify diseases like rheumatoid arthritis, osteoarthitis, and fibromyalgia. These surveys accurately record a patient’s experience with lupus. Plus, for some, studies have been conducted correlating their results to disease metrics like intensity. Reported experiences are very consistent with a person’s actual inflammation, as confirmed with MRI.

Patient-Reported Outcomes and Flares

Flares have been a challenging area for lupus research over the years. A major challenge has been the discrepancy between patient-reported flares and traditional flare assessments.

Clinical rubrics, such as the SELENA-SLEDAI, require a certain change in overall score to determine a flare status. Points are assigned based on immunologic and objective measure. However, due to the scoring structure, a Lupus Warrior may experience an uptick in symptoms without meeting this flare threshold.

You may have experienced the discrepancy outside of research studies as well. By the time you get into see your rheumatologist, symptoms can fade. Then, your rheumatologist may not be comfortable suggesting treatment changes.

Lupus flares are known to dampen feelings of physical and mental well-being. PROs are a way to better understand the burdens that people are facing with lupus – and thus how to treat them. A July 2020 study in Quality of Life Research finds that PROs can open the door to better treatment.

The limitations of PRO surveys are that people have expectations about their symptoms, and are hampered by a sense of politeness. On these surveys, people often don’t mention less severe symptoms in an effort to “not waste the doctor’s time.” When you fill out a PRO, take the time to take a personal inventory and report as accurately as possible.

What Affects Quality of Life?

Patient reported outcomes provide a unique window into the factors that affect the quality of life for people with lupus. So, what do we see?

First, let’s look at depression and anxiety. PROs are a great way to screen for mental health symptoms in people with lupus. Depression and anxiety have a huge effect on quality of life, across all races. PROs can provide an early indicator, even just to yourself, that it may be time to seek additional support.

PROs also can help reveal risk factors for severe symptoms and other problems. In a representative sample of women with SLE, people considered medically obese (with a fat mass index of greater than 13 kg/m2 and a body mass index of greater than 30 kg/m2) were associated with worse PRO outcomes. These end points (goal measures of a research study) are more flexible and can identify variations in clinical experience. 

The analysis involved 148 participants, 32% of whom were obese. Obese people had more pain, fatigue, and symptoms of depression than people with healthy body weights. The trouble is, of course, that these symptoms also interfere with weight control strategies; it’s difficult to exercise and eat healthy when you are in pain, low on energy, and depressed!

These are all quality-of-life measures that are not easily determined through other means. With PROs, doctors can hear them right from the patient’s mouths, and can track a patient’s quality of life over time and across treatments.

A Lupus Warrior’s Takeaway

Patient-reported outcomes are surveys that can change the game for people with lupus. They can turn your lived experience into a series of data points that your doctor can understand. As proven methods of determining SLE symptoms, PROs can nudge your doctors and treatment teams into action. Treating the issues and symptoms that you really care about and improving your overall quality of life.

Ask your treatment team about how you can use PROs to improve your care and your life. Also, look for tools that use research-validated PROs!

We humans are social animals, and we like to connect with each other. The most popular apps in the world are those that make it easy to share with each other.

However, for people with lupus, many methods of connection might be off the table. Or, it can leave people counting their spoons.

Pain can limit mobility. UV light– and heat-sensitivity means limited time outside or in the sun. Add in medical treatments, and scheduling time with others can become very difficult. Increased infection risk can make getting together a scary prospect. Fatigue can cause a lot of rescheduling.

It’s hard, and this difficulty can take its toll on both physical and mental health.

Social media offers a way of socializing with others that fits your schedule. Sites like Facebook, Instagram, Twitter, our LupusCorner app, and others all offer digital ways to socialize with others. Going digital helps fit socialization into a hectic and busy life, and takes out many of the barriers to socialization that people with lupus endure. Social media also allows people to connect with others who have the same condition even if they aren’t in the same city, state, or country!

The benefits of social media are tricky to measure scientifically.  However, there are studies that have looked at social media use in people with chronic diseases. A review in the American Journal of Medicine that collected and reviewed such studies:

“Using social media to provide social, emotional, or experiential support in chronic disease, especially with Facebook and blogs, appears most likely to improve patient care.”

Social media use may also improve medical outcomes in other ways. How does using social media help, however? What does it do?

Your Social Media Community and Lupus

Part of it comes from the social nature of social media. Friends and family can be connected and communicated with even while bedridden, and new friends can be made through online interactions. Experiences can be shared in such a way that it feels like one is there. It’s harder to feel left out when you are being brought in through a shared story or a livestream.

Social media also acts as a kind of support group (or series of support groups) with a very wide net. This is true for both patients and for caregivers, allowing to communicate with people in the same situation. However, the internet – and the social media on it – are more than just a platform for support groups. Social media also allows medical professionals to build connections with people with lupus, discuss medical procedures and programs, and swap tips and tricks. Patients and caretakers using social media feel empowered, according to studies, to take on both doctor and disease, as though they have a whole online team behind them.

However, the “social” element is not the only use of social media! People use social media in many ways – connection, yes, but also, according to a 2016 study, “Exploration” and “Narration.” In addition to fostering connections between people, allowing people to exchange advice, creating a sense of community, and creating a feeling of being “believed,” social media can be a great disease education method.

Lupus Education Through Social Media

Social media can link people to clinical trials, disease resources, and services. Videos, articles, and forums are useful sources of information. This information can include links to scientific resources, personal experiences, care tips, Q&A sessions, educational videos, and other useful media for people with lupus. From self-care to drug information, social media can be a very powerful tool.

It can also be a way for medical organizations to bring their information to a larger group. An article on healthy lifestyle choices on social media is likely to be seen and then shared by the people it is relevant to. They can also receive swift feedback on how useful their resources are and how they can do better.

Social media can even close the gap between doctors and patients, and allows people with chronic diseases to be informed consumers. This is especially important in lupus, where self-advocacy is sometimes key to receiving proper diagnosis and care. Education is the key to self-advocacy and social media may be an important gateway to the relevant knowledge.

It should be noted, though, that education is two way – as patients are learning more medicine, medicine is also learning more about how people interact and ask questions outside of the clinic.

What are the Downsides of Social Media?

Let’s face it, socialization can be stressful. It can be difficult to break away and get needed space from social media, and the drama is legendary.

If social media is causing you anxiety, lowering your self-esteem, or otherwise making you feel bad, then you should be very careful about using it. Consider using different social media platforms than what you are using, or finding a new forum community.

If social media use is eating your time and your energy, limit time with your devices and try to find other ways to fill the support roles. A good way to compromise is to use social media to arrange visits, outings, or calls with people in your life.

Another issue with social media – and the internet in general – is that there is a lot of misinformation to be found. Chronic diseases such as lupus, in particular, can have a lot of misinformation (and sales pitches) spread around the internet, pretending to be legitimate articles. Make sure that your sources are reliable and fact-check any and all questionable information!

 

A Lupus Warrior’s Takeaway

When used properly and in moderation, social media can be empowering, educational, and valuable for people with lupus. It can even improve health. Be sure to take advantage of the different types of media available on social media, including visual, auditory, reading, video. Some are easier or less fatiguing than others.

Find out what works for you, and take advantage of the wealth that the internet provides!

Who is an advocate?

An advocate is a person who supports or promotes the interests of a person or group. In your case, your job as a caregiver is to ensure that your Lupus Warrior’s physical and emotional needs are met. Your job as an advocate is to get the resources to make that happen. Whether that is bringing up symptoms to a doctor, fighting for a diagnosis, pushing for new or better care, or building confidence, your role is to be a second voice. 

Getting educated about lupus

First, learn all that you can. It is difficult to advocate for someone else if you don’t know what they are going through. Talk to your warrior, look up information, and take notes. That way, when you go into doctor meetings, insurance calls, or other situations, you go in armed with the right information. 

So – where do you get this information?

 

Educational resources for lupus

You can:

• look up scientific papers on PubMed
• read medical journals
• run Google searches (be sure to check out Google Scholar for published papers)
• Check out information from organizations like:
  • Lupus Foundation of America
  • Lupus Research Alliance
  • National Organization of Rare Diseases (NORD)
  • American College of Rheumatology
• Read lupus-specific sites of blogs like LupusCorner
  • Be sure to check the references/sources
• Turn to hospital-specific pages
  • Johns Hopkins Lupus Center

Be in the room

One of the most important ways that you can advocate for your Lupus Warrior is to simply be an ally. It a big help to have a second voice, brain, and set of eyes and ears who can help during a clinic visit.

Outside of the doctors office, you can document their symptoms in a logbook. In meetings, you can take notes, ask questions, and otherwise back your Lupus Warrior up.

Or, you can just listen. Just by being there, you will catch information and make observations that can easily be missed. Visits a short and a lot can be said quickly. This helps you learn more about lupus, pinpoint what is really important, and get the best care.

Being in the room also means keeping them company during trying moments, which brings us to our next point:

Be a friend

With lupus comes a great deal of stress, and a lot of normalcy and perspective can get lost in the mix.

Part of your job, as a friend and an advocate, is to be a lifeline to normalcy. Do normal things. Talk about normal things. This is more than just comfort. By acting as a reminder of what is normal, you also act as a reminder of what is not. This makes it easier to catch problems (including new symptoms and bad behavior from doctors) much faster.

Don’t forget to take care of yourself

Taking care of someone who needs help is both a noble and necessary thing, but you are also taking on a lot of the other person’s stress. Stress, untreated, can lead to illness. If you don’t find a way to create time for yourself, it can hurt you – and the person you care for.

Many caretakers, in prioritizing the care of their warrior, neglect themselves. There can be a lot of pressure to do this, and giving in to it can feel like the right thing to do. However, by not taking care of yourself, you run the risk of making yourself sick.

This is a well-known condition called “caretaker burden.” Though acting as a caretaker is less of a burden and more of an act of friendship and love, it can still stress the caretaker’s body out. If you are a caretaker, you are at high risk for depression and insomnia, and the stress can trigger or exacerbate your own chronic diseases.

If keeping your health isn’t enough to motivate you, then think of it this way: if you’re sick, will you be able to provide the level of support that you want? You are more likely to miss something important or make mistakes in care. Or, you may simply be unable to help, directly or as an advocate.

So take breaks. Eat, sleep, drink, shower, take physical and mental health breaks and otherwise keep an eye on your own well-being. Go out, make friends, find support groups. Caretaking and sickness alike can be isolating and support groups are scientifically proven to reduce depression and improve psychological well-being in caretakers. 

There is also no shame in finding or hiring help to take some of the work off of you. This can be especially helpful if there is a task or series of tasks that are particularly difficult to manage. People can sometimes bring you down and accuse you of not caring. But stand up for yourself. The goal of caregiving is to help someone else, not harm yourself.

Other resources for lupus caretakers and allies

You are not alone in this! There are many resources and support available to both patients and caregivers to be better advocates. LupusCorner’s app (available on Android and for iPhone) is a great resource for information and we have a forum for patients and caregivers. It also features easy symptom tracking and medication management tool 

But, it can help to have more than one place that you can go. 

Lupusconnect is a site that acts as a resource and forum for patients and caregivers, though you need to become a member to use the site. 

Smartpatients is a lupus discussion forum that, while oriented for patients, can give caregivers insight, support, and strategies to advocate more effectively for their Lupus Warriors… or make their lives easier.

The Family Caregiver Alliance is an organization run by the National Center on Caregiving. The Caregiver Action Network is a nonprofit organization for family caretakers. Both are have information, resources, and support services for caregivers. 

You can find a list of resources you can use to find support groups in your area here. A physical support group has the additional advantage of getting you out of the house and socializing, which helps you keep up your mental and emotional health – so you should check them out.

Finally, Reddit, a major forum aggregator, has a forum for caregiver support specifically.  

How would you rate your lupus treatment team? Are there topics you wish they would cover more during visits?

Share your experiences and learn from other Lupus Warriors! Click below

What is Shared Decision Making?

Shared decision making is a bit of a buzzword, but it gets at theories of care that have been in healthcare for a long time. Simply, shared decision making is an approach to healthcare where the doctor and patient work together to make health decisions.

“But, wait. I don’t know which treatment option is best for me… that’s why I’m at the doctor.” Shared decision making is about making you, as a patient, do tons of more work. It’s about increasing patient autonomy in a field where there often multiple treatment choices.

Patient autonomy and shared decision making

Increasingly, there is not one fixed treatment plan for lupus and other health conditions. Instead, there are a number of treatments that each have pros and cons.

When using a shared model for decision making, doctors encourage their patients to share personal beliefs, including risk thresholds, to determine appropriate options.

Other clinicians have built models that may help doctors and patients work together. One such model, published in 2012 in the Journal of General Internal Medicine defines a 3-step process for shared decision making:

1. Choice talk
   • During this phase, doctors share that there are “reasonable options available” for treatment
2. Options talk
   • Doctors provide additional information on the treatment options and may use other frameworks to help share info
3. Decision Talk
   • Working with patients, listening to goals, and determining the best path forward based on all information available

 

In general, these strategies have been used more and more in recent years. And, this seems to coincide with patient preference.

A review conducted in 2015 found that 71% of patients preferred to participate in the decision making process as of 2000. This is an increase from the pre-2000 numbers where only 50% of patients wanted to be involved.

As additional models are created and tested, there will be more research exploring the benefits and risks of this approach.