Caregivers and Lupus Warrior Allies: Helping Advocate

Living with lupus is tough. But, being a caregiver comes with challenges, too.

Lupus doesn’t just attack an individual – it hits the whole family network. You, the caregiver or ally (or the Lupus Warrior about to share this article) are not walking an easy path. It can be overwhelming for everyone involved. 

A caregiver, according to the Merriam Webster dictionary, is someone who gives physical or emotional support to another person. Caregivers can be family members, friends, allies, and paid support staff. Regardless of who they are at the beginning of the journey, they can end up feeling a lot like family. 

Here at LupusCorner, we have a lot of respect for caregivers. You’re an integral part of the lupus treatment team. It’s a position that can come with long hours, stress, and lots of worries. And an unsettling feeling that you wish you could do more.

Caregivers, thank you for all you do! Here are a few tips to help you be a strong support system (and to make sure you make time for your own needs, too!)

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.