Living with Lupus

Support from Caregivers That Works (& What Doesn’t)

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Managing the ups and downs, the twists and turns, of lupus is an on-going battle. What support do Lupus Warriors find most useful and what else can caregivers do to help?

No two people with lupus are alike. That doesn’t just mean that symptoms and disease fluctuations are different (though they are). It also means that personal preferences, desires, and how people choose to spend their spoons differ, too.

In this month’s LupusCorner Q&A Forum, Lupus Warriors share how their friends, family, and caregivers help support the lupus care journey.

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Katie

My family, friends, and/or caregiver help me manage lupus

3/5 (neutral)

What are the most useful things your family, friends, and/or caregiver do to support you?

They don’t push me to do things during a flare/when I am not feeling well but they also (fortunately) don’t treat me differently (I am not my disease); my husband picks up my meds or flexes our plans to meet my needs; most importantly though, they all listen and continue to love me.

How could you be better supported by your care network?

I wish there was better public awareness and a higher level of understanding about what lupus is in the general population

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Michelle A.

What are the most useful things your family, friends, and/or caregiver do to support you?

Helping me with physical tasks when I am unable to perform them during a severe flare.

Mental support in the form of always being a positive and understanding voice on the end of the phone line, WhatsApp or Facebook messaging when I want to grumble about my lupus.

And simply just offering up their time to visit me when I’m ill at home or in hospital, or the flexibility around moving work appointments and deadlines to accommodate me during times when I am unwell.

How could you be better supported by your care network?

It would be nice if there was a more official lupus forum supported by the public system here in New Zealand as opposed to a Facebook group where I can meet other individuals living with lupus. I know three people with lupus at this stage who’ve taught me a lot about living with the symptoms, and I know them only thanks to mutual friends introducing them to me.

It would be helpful if there was a support group readily available when I was diagnosed in the public system – admittedly there was a support group for people with connective tissue disorders, but the website was long disbanded when the nurse at the public hospital informed me about it.

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Janell

My family, friends, and/or caregiver help me manage lupus

5/5 (strongly agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

They help to keep stress out of life as much as possible, when I need to rest they know that I need to and allow it, no questions asked, at times they will even wait on me dinner in bed, juice in bed, rub my back, close the blinds, extra blanket. The little things make a difference when you feel bad.

How could you be better supported by your care network?

I don’t know that I could be, you always have people in your extended family that says “there is nothing wrong with her/him they do that for attention.” That is why they are considered “extended” family.

Living well within the limitations of lupus

My family, friends, and/or caregiver help me manage lupus

4/5 (agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

My family and friends graciously accept the fact that I often “bug-out” of planned activities because of my unpredictable lupus “down” days. No one expects me to hold dinner parties, babysit or travel with them.

My husband reels me in when I start to overextend myself. I can get so wrapped up in something I enjoy and “use up” my low energy reserves – then need to rest for several days. He sees it happening when I don’t. Sometimes the joy from the activity is worth the following downtime.

The volunteer work that I can do for a couple of organizations is structured in ways that I do what I can when I am able, which helps me feel connected to my community.

How could you be better supported by your care network?

I live in an area with few specialists trained in treating the complexities of managing lupus. Fortunately, I know my body very well and get help before a flare gets out of hand.

Sandra O.

My family, friends, and/or caregiver help me manage lupus

5/5 (strongly agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

My Caregiver/Doctor listens to me and takes my discomforts seriously. My family tries to help me alleviate stress and they help me complete physical tasks, that might be too much for me to complete on my own. They check up on me and encourage me to rest when I need it.

How could you be better supported by your care network?

My care network does a good job of addressing any concerns I have regarding my health.

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Holes in our care

My family, friends, and/or caregiver help me manage lupus

2/5 (disagree)

What are the most useful things your family, friends, and/or caregiver do to support you?

Helping me with heavier tasks, doing those I can no longer do. Cleaning up kitchen at end of day. Emotional support in dealing with problems related to [lupus]

How could you be better supported by your care network?

Those who are close to me, like sons who live locally, making themselves a little available verbally for rides to doctor on my off days, etc. Just showing more interest or concern for what I’m dealing with related to lupus.

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Carol C.

My family, friends, and/or caregiver help me manage lupus

2/5 (disagree)

What are the most useful things your family, friends, and/or caregiver do to support you?

I don’t feel supported except for them asking how my doctor appointments go.

How could you be better supported by your care network?

I wish that they would come to some appointments and ask questions. Also, I wish that they would understand the limitations I face with lupus.

Early loopy blues

My family, friends, and/or caregiver help me manage lupus

3/5 (neutral)

What are the most useful things your family, friends, and/or caregiver do to support you?

Remind and encourage me to stop when I am too focused on something and don’t notice I’m pushing myself.

How could you be better supported by your care network?

If they followed through with help when promised – or just don’t offer to begin with.

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BeyondBlessed!

My family, friends, and/or caregiver help me manage lupus

4/5 (neutral)

What are the most useful things your family, friends, and/or caregiver do to support you?

My mother is my rep-payee for my disability pay. She also acts as my memory for paperwork, appointments, meds, etc. My son drives me places, when I am unable to drive safely.

How could you be better supported by your care network?

I often feel as though I’d be better supported by my family being more understanding of how SLE affects me & why I make some of the choices that I do.

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How those around me affect my lupus

My family, friends, and/or caregiver help me manage lupus

5/5 (strongly agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

My husband always listens to me about my symptoms, medication changes, doctor appointments, and lifestyle modifications. He is my advocate when it comes to protecting my health and minimizing my symptoms in the midst of any kind of stress.

How could you be better supported by your care network?

Many people – family, friends, acquaintances, coworkers, employers, even other medical professionals – simply don’t understand how many symptoms there can be to lupus and how those symptoms can affect the lupus sufferer differently from one day to the next.

People in one’s care network can help by listening to those of us with lupus, accepting our struggles, and working with us to find possible ways to alleviate the symptoms.

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Shakirah

My family, friends, and/or caregiver help me manage lupus

5/5 (strongly agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

They make sure I get to all my appointments, make sure I eat properly and help me with anything I need. Example, bathing, washing clothes, housework and cooking.

How could you be better supported by your care network?

I think I have an excellent care team. All my doctors and nurses work together to help me manage Lupus SLE and ESRD. It’s not easy, but they keep me as healthy as possible.

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WBW

My family, friends, and/or caregiver help me manage lupus

3/5 (neutral)

What are the most useful things your family, friends, and/or caregiver do to support you?

Keep in touch and understand when I am unable to participate in a planned event

How could you be better supported by your care network?

More help with everyday chores and help with meal prep on bad days

Rebecca B.

My family, friends, and/or caregiver help me manage lupus

5/5 (strongly agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

Understanding of when I need to rest and take it easy during a flare. Also they accommodate outings and my need to stay out of direct sunlight.

How could you be better supported by your care network?

In my experience here in the northern Kentucky area rheumatologists don’t focus much on anything but the joint pain which is a small part of the symptoms. They don’t seem very familiar or up to date on therapies or tx let alone dx. It took years to get a dx which they constantly change and tx

Kelly

My family, friends, and/or caregiver help me manage lupus

2/5 (disagree)

What are the most useful things your family, friends, and/or caregiver do to support you?

Listen when I want to talk about my feelings

How could you be better supported by your care network?

If they could understand that I may look fine but inside I hurt

Lupette

My family, friends, and/or caregiver help me manage lupus

5/5 (strongly agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

Cook, clean and shuttle me around

How could you be better supported by your care network?

I wish they would just read my records. They always start from the beginning and it is exhausting to have to try and remember it all to give an accurate picture.

Lisa J.

My family, friends, and/or caregiver help me manage lupus

2/5 (disagree)

What are the most useful things your family, friends, and/or caregiver do to support you?

Give me space and time…ease up on demands

How could you be better supported by your care network?

If they would take the time to learn more about lupus, so they could understand what I deal with on a daily basis a little better.

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Kay

My family, friends, and/or caregiver help me manage lupus

5/5 (strongly agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

Fortunately my hubby is a great cook, most the time I don’t feel like fixing meals.

How could you be better supported by your care network?

Doctors need to communicate with each other.

Liz A.

My family, friends, and/or caregiver help me manage lupus

1/5 (strongly disagree)

What are the most useful things your family, friends, and/or caregiver do to support you?

They let me rest when I need to.

How could you be better supported by your care network?

I have to care for myself.
My lupus has been stable for awhile now. I practice self-care in different ways.

Pam

My family, friends, and/or caregiver help me manage lupus

3/5 (neutral)

What are the most useful things your family, friends, and/or caregiver do to support you?

Remind me to pace myself

How could you be better supported by your care network?

If everybody would wash their hands to decrease viruses to help in my lowered immunity.

Lisa W.

My family, friends, and/or caregiver help me manage lupus

2/5 (disagree)

What are the most useful things your family, friends, and/or caregiver do to support you?

Help with house chores

How could you be better supported by your care network?

More understanding of lupus and what I am going though

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Thanks to everyone who shared their experiences with lupus!

Interested in contributing to the LupusCorner Q&A Forum? Send an email to hello@lupuscorner.com to get added to the mailing list!

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