Explaining Lupus Pain and Fatigue to Friends and Family

Interacting with family and friends who don't understand what it's like to live with lupus is one of the most challenging experiences when coping with the disease.

They might insist that fatigue is simply being tired and blame your time in bed as your own laziness, or your lack of not trying hard enough to get up.  They might take it personally and become angry that you have had to repeatedly cancel plans due to fatigue or a flare. This might cause them to become angry or eventually cut ties with you.

When loved ones don't understand lupus, especially major, common symptoms like fatigue and pain, interacting with them can be difficult. Finding ways to help them understand pain and fatigue could help your relationship with them.

Be Specific About Pain Symptoms

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Pain can mean different things. When describing your pain, be specific about the type of pain you're experiencing. For example, is it a sharp pain? A stabbing pain? A dull ache? A burning sensation? Every time someone touches you, does it feel like they're pressing into a bruise even when there is no actual bruise?

In addition, explain where the pain is located. Is it all over your body (widespread pain)? A sharp stomach pain? Joint pain? Back pain? Knee pain?

Explain how it impacts you. Do you have trouble getting out of bed in the morning due to joint pain and muscle stiffness? Does it hurt to write with a pen? Is there a stabbing pain in your knees when you walk?

Here are a few examples of how to explain pain:

"It's hard for me to walk. I have a sharp, stabbing pain on both sides of my hips."

"The stiffness in my muscles and joints causes me pain when I move. When I try to get out of bed in the morning and stretch and unfold my limbs, it feels like I'm prying them apart. They feel swollen and achy. I feel like the Tin Man because they feel frozen in place, which is scary but also requires that I get out of bed slowly."

"My whole body feels like a giant bruise. I mean no offense, but please don't touch me. Even gentle touch can be painful for me."

"The joints in my feet feel like they are on fire. It hurts to walk."

Describe Fatigue in Ways People Without Lupus Can Relate To

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Fatigue is challenging for people to understand who have never experienced it. The word fatigue is used in everyday conversation by people without chronic illness as a way to explain that they are very tired. This only adds to the confusion about fatigue.

A good way to help them understand fatigue is to describe it in a way that relates to something they have experienced or can imagine. Otherwise, the idea of fatigue tends to be too abstract and vague.

Fatigue, even for people with chronic illness, comes in different intensity levels. Find examples that apply to your situation.

Example #1 - Since Everyone has had a bad cold or the flu at some point in their lives, using these experiences as examples usually works. Say something like, "You know how you feel when you have a fever? Your whole body is drained of energy and aches all overs. No matter how much you want to get out of bed all you can do is lie there or sleep? When I say I'm fatigued and can't get out of bed, that's similar to how I feel. Except, I don't have a cold or the flu. Lupus causes my fatigue."

Example #2 - Another common experience is feeling exhausted after overdoing exercising. You could say something like, "Have you ever pushed yourself too hard while working out and all you do afterward was go home and lie on your couch and watch television? Imagine that, except instead of a one- or two-hour workout, how might you feel after a 27-mile marathon? That's how it feels for me sometimes. There are days when I wake up and all my muscles ache like I ran 27 miles the day before. Except, all I did yesterday was go to work. I wanted to go to work today, but I could barely make it to the bathroom to brush my teeth.

Example #3 -  There might be examples from your life if you have experienced something that you can describe in a way that others without lupus can imagine and understand. 

For example, "I wanted to go to the gym, but by the time I got dressed and drove there, all I could do was put two chairs together and lie there for two hours. That's fatigue."

Example #4The Spoon Theory: Christine Miserandino's Spoon Theory has been highly successful in helping people explain fatigue not only in the lupus community but in chronic illness communities where fatigue is a major symptom. It's available in multiple languages, easy to read and understand, and you can download a copy and hand it out to friends and family to read.

Ask for Help

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There will be times, especially during a flare, that you will need help. Typically, the more your loved ones understand what you are going through, the more supportive they can be—the more supportive they will want to be. 

For some, asking for help is often easier said than done, but don't be afraid to ask for help. Your loved ones want to help you. It gives them a way to stay involved in your life and a concrete way to offer you support. 

Be clear about what you need from them. What you need might seem obvious to you, but not to them. For example, you might say, "I need you to remember that when I cancel plans, it has nothing to do with you. More than anything, I want to go out. If I cancel please try to understand that it's because I don't feel well, and please continue to be my friend and continue inviting me places."

And when your loved ones are helpful and supportive, acknowledge their help. This helps them recognize that their behavior was helpful to you, but also a thank you goes a long way.

Explain Mood Changes

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Both pain and steroids can cause behavior changes.

Pain can cause so much discomfort it can negatively impact a person's mood. Also, steroids can cause irritability and mood swings. Let your loved ones know not to take your behavior personally, and be clear with them about what you need from them to help you get through these experiences.

It's also a good idea to speak with your rheumatologist if you are experiencing pain intense enough to impact your moods, or if steroids are causing behavior changes.

Invite Loved Ones to Support Groups and Lupus-Related Events

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An excellent way for your loved ones to get a better understanding of lupus is to be involved in the lupus community. Hearing the experiences of others with lupus at support groups and attending lupus education events will help them learn more about the disease and how it impacts people's lives, including yours.

Know When to Let Go

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People aren't always responsive to your attempts to communicate with them about your life with lupus. They might continue to call you lazy, not believing your symptoms because you don't look sick. They might relentlessly offer misguided advice that you can pray away your disease or cure it with a special diet. They might disappear.

None of this type of behavior is your fault.

For example, their well-intentioned but misguided advice tends to come from a place of true concern for your well-being and their own wish for you to be okay because they love you.

Sometimes it's that they're afraid of what might happen to you, and this fear is more powerful than their ability to cope. Or maybe they've convinced themselves that being there for you is just too complicated.

They might continue to take it personally when you cancel plans.

Everyone responds differently to their loved one's illness, and the way they respond to your life with lupus has to do with how they cope with such realities.

Because of this, some people are unable to give you the support you need. Or some people might be limited in giving you support. Maybe they can't be the listener that you need when you are having a bad day, but they are excellent company when you need a good laugh.

Other people become unsupportive to the point of becoming toxic to you. It's important to know that you are allowed to distance yourself from and limit communication with people who you feel are emotionally unhealthy to be around.

And grief is a normal response to this relationship loss. Unfortunately, this is not a rare experience when it comes to living with a serious chronic illness, so sharing your story with your support group will sound familiar to many people. Sharing your story could also help you cope with the loss.

Use "I" Statements

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 Use "I" statements instead of "You" statements. They are a gentler way to handle confrontations and help reduce the other person's level of defensiveness. For example, instead of saying "You're cruel to constantly accuse me of being inconsiderate when I canceled plans," you could try something like, "I felt hurt when you accused me of being inconsiderate for canceling plans. If I could have gone out, I would have, but I was feeling so bad, I had to stay in bed. Trust me, I would have much rather preferred to feel well and go out with you than to feel the way I did."

Good Communication Goes A Long Way

Just like it is important to learn how to communicate well with your doctor, it's important to use these communication skills with your friends and family. While it might feel like work, it can help improve your relationships and also the level of support they give you. In turn, this can help improve your life with lupus.

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