What I Want Others to Understand About Lupus

Posted on January 29, 2017

by KristieBauer

Chronic pain is not as common in teens and young adults, but that doesn’t mean it doesn’t exist. It’s not always something that can be seen, which makes it hard for others to understand. So here’s the rundown of what I want others to know about my lupus and chronic pain.

I am not crazy.

This is not in my head. I promise you, I wish it were. I am not a hypochondriac. I get it, I don’t look sick. The thing about chronic pain is, most of the time, it’s invisible. Please don’t think I’m making this up. Please don’t think that I am doing this for attention. I do not want the attention. Not for this.

I am not lazy.

Actually I have to work harder to do normal things. Like getting out of bed, getting ready, going to work…

I don’t over-exaggerate my symptoms.

Actually most of the time, I play down my symptoms. From what I have seen, people with chronic pain are usually in more pain than what they are saying. Even to their doctor.

It takes a lot of effort to appear normal.

“But you don’t look sick” is a common phrase for people with chronic pain. Some days I have to work at it. Some days I choose sleep over getting ready.

My chronic pain is not the same as your sore throat.

You may mean well by trying to relate to me about you not feeling well. And I by no means want you to be sick, but it’s really not the same. I don’t mind hearing you talk about being sick because I know it does suck. But if you try to compare it to me, I’ll probably stop listening.

When I cancel plans, it’s likely because I have to.

During a flare, I have to choose what I want to spend my energy on wisely. Some days I have enough to get up and get ready, go to work, and do something after work. Sometimes I run out of energy by the time I get up and get ready. If I say I need to stay home and rest, it’s because I really do need to stay home and rest.

I am not a party pooper.

Alcohol can make me sore. If I’m already in a flare up, I try to avoid alcohol. I’m not trying to be lame. Some of my medicines I can’t drink alcohol with at all. Others make me feel sick after one or two drinks because they don’t mix well with alcohol. This doesn’t mean I can’t have fun.

The medicines suck.

The medicine that they give me suck. I’ve been on chemo drugs, anti-malaria drugs, steroids, pain killers, biologic drugs, anti-seizure drugs… The list goes on and on. A lot of times the side effects of the medicines are worse than the symptoms themselves.

I am still happy.

Just because my lupus is flaring, doesn’t mean I’m miserable. I may be in pain. I may not be healthy. This does not mean that I’m completely miserable or unhappy. I’m an overall happy person. I have days where I wonder “why me?” If I didn’t, I wouldn’t be human. But if you think I seem happy. I am. This doesn’t mean that I’m not still dealing with my flare, or that I am not in pain. It just means that I’m happy. It’s as simple as that.

I get really excited when I have a good day.

Even during a bad flare, I will have days that are better than others. Those days are nice. It doesn’t mean that I am suddenly better. It means I’m having a good day and probably really excited about it!

…And really bummed when I have a bad day.

It can be really hard to accept that some days you are not able to do things that you want and love to do. Sometimes resting needs to happen whether you want to or not and whether you have time or not.

It doesn’t get any easier.

I’ve had lupus for over a decade now. I’ve gone through a lot. I have adjusted my lifestyle for my lupus. I never get used to it. This is not something you can ever get used to. It still hurts. It’s always there.

It’s not a big deal, but it’s there.

My lupus hides and rarely shows itself to others. I know I don’t look sick, so it’s easy for people to forget. I am really good at hiding my pain. It is nice for people to ask how I am feeling and actually want to know the real answer. It is also nice to have someone who will help without making me feeling like an inconvenience.

I need support from friends and family.

I wouldn’t have been able to get through each day without the support of my family and friends. I probably won’t ask for help. So being offered help sometimes is nice. I won’t always take you up on it, but knowing you are there to help, makes a difference. And sometimes just being there is helping more than you know.

Are you living in chronic pain? What would you add to the list?

This article was originally published here and is reposted with permission. Kristie Bauer is a graphic designer who lives in Stillwater, Minnesota with her husband, Pete; son, Kevin; and dog, Maggie. She was diagnosed with lupus in November 2004 as a senior in high school.

A MyLupusTeam Member said:

You may need to talk more with you doctors

posted about 1 month ago


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