Your Pain Is Fake

By Jokiva Bellard

2 min read

"Your pain is fake." That's what I hear when it comes to me complaining about lupus pain. Does it hurt to have lupus? Yes, in most moments. I can't say that I will be okay every morning to hop out of the bed and take off running.

I have to set an alarm two hours before work and I work from home. Why? Because my body is in pain from the first moment I wake up. I have to get my body to wake up before I decide to get up. Then I have people that try and make me do things, and throw it back in my face asking why am I in that much pain.

Pain medication judgment

I have had different types of healthcare professionals treat health issues as if they were a joke or being faked.

I went to the emergency room one time because I was having a flare up, and they prescribed me a pain medication. Because I asked what the medication I was receiving was, I was treated as if I was an addicted patient (and I was not). I don't even have any pain medication at home, except for Tylenol.

Think about it though, if a person is crying in pain why would you think they are faking it? I have had someone at a hospital do a full drug screen panel on me, and literally it came back clean - and then I was prescribed pain medicine. They just say, oh this is something we have to do.

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I understand if you suspect someone is lying, trying to claim they are not an addict when there is evidence. Some people try and treat me as if I'm uneducated, but common sense is common sense.

Judgment from friends

I have had deep connections with people that fell off, all because of the pain that I am in. If we plan a vacation, I might not make the trip due to me getting sick and being in pain. I might have to let them go have fun first, and I'll show up later because I am in pain. Some friends don't understand that.

I will always want to be invited even if they feel like I might say no or cancel. I can not control my body and what happens the day of the event. But I expect friends to be understanding because they have watched me go through the turmoil so why not be considerate of my lupus pain.

Being told by someone that you're exaggerating pain levels can end a friendship so quickly.

Being honest about pain

Think about cancer patients, autoimmune patients, and more who are treated poorly for being honest about pain. One doctor told me, I am trying to understand because we treat your condition with steroids.

I had to let her know, "yes ma'am, which causes another health issue because I have onset osteoporosis due to high steroid use and now I am in pain when I walk. Because of the steroid use I lack tissue between my bones."

When it's cold I hurt. If I do too much I hurt. If I stress too much, there is pain.

If they are trying to get people from being addicted to pain medication, they need to find another route.

Treatment results and side effects can vary from person to person. This treatment information is not meant to replace professional medical advice. Talk to your doctor about what to expect before starting and while taking any treatment.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Lupus.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Christinesusername Member
THANKS FOR THIS. I RELATE VERY MUCH. I HAD A VERY HARD TIME IN THE FIRST BUNCH OF YEARS, BECAUSE, LIKE MANY, THE DIAGNOSIS WAS NOT GIVEN. MY ANA WAS NOT FOUND POSITIVE UNTIL A THREE YEARS AGO. IRONICALLY, MY SYMPTOM ONSET, WITH NEG. ana WERE THE MOST CONSTANT AND MOST SEVERE. THEY STARTED ABOUT 11 YEARS BEFORE MY DIAGNOSIS. BUT THE "PAIN IS NOT REAL" CAUGHT MY ATTENTION, AS MY SISTER WENT TO THE SAME RHEUMY AS I INITIALLY DID AND THE DOCTOR SAID TO HER "YOUR SISTER'S PROBLEM IS ALL MENTAL" IF THIS WASN'T 18 YEARS AGO, i WOULD GET A BIT LITIGIOUS! LOL MY SISTER ONLY RECENTLY TOLD ME THIS, BUT I KNEW IT, i COULD ALWAYS TELL, SHE WAS SO CONDESENDING. ONE DAY I CAME IN TO DOC AND TOLD HER I WAS NOT DOING WELL AT ALL, AND SHE ASKED IF I HAD BEEN DRINKING. I ALMOST NEVER DRINK. SHE WAS THE WORST, BUT I THINK MANY CAN RELATE TO CONDESENDING AND DISMISSIVE DOCTORS. SORRY ABOUT ALL CAPS.. I WAS HALF WAY THROUGH WHEN I NOTICED. NOT SCREAMING. 
1. cassandra Member
 <inline-mention username="Christinesusername" user-id="8571331"/> When I was first trying to figure out what was going on, I was taking naproxen. It turns out the dosing instructions are there for a reason 😝 I started using THC. When I went to a rheumatologist, and they asked what I'm taking for pain management, well, they addressed that right away.
2. Christinesusername Member
 <inline-mention username="cassandra" user-id="7005092"/> sorry ..I don’t think I site since I responded to you. I hope everything's going good and your pain isn't so bad. Are you saying that they had you stop the THC? I hear it helps so many people… it certainly not as dangerous as some of the painkillers (sometimes in some circumstance). I actually really wish that I didn't have a problem with THC I can barely even take a little bit of CBD. I go into the worst panic attack, it's definitely a neurological thing, but the few times that I had some strain of THC, if I only took a teeny bit it would stop my nausea or terrible headache or whatever immediately. . That's why I wish I could take, but apparently there's something up with my system that just can't do it. (of course that would happen with something that helps right.) I take Mobic for pain it's like naproxen but a little bit stronger. As of now I take it when I need it but I think I need to start taking it daily soon.
CommunityMember6886323 Member
Omg I felt all of this, it’s crazy that the people that you think would truly understand don’t. Thank you for sharing your story.
Autumn84 Member
I completely relate to this. My own GP keeps me on such a tight leash with pain meds it's ridiculous. On one occasion, I had inadvertently thrown the repeat prescriptions in the bin with the bag the chemist put the pain meds in. I was in a flare and so foggy....anyway, I was in trouble because I needed the pain meds for pain - not because I abuse them. When I made another appointment to see her to explain what had happened, she refused to help me. I knew immediately she was of the opinion I was abusing the pain meds. My family and friends helped me over the next excruciating two months. When I went to see the GP again, she still had her doubts, so I suggested she call Medicare to check if the repeat scripts had been filled. She did, and they had not. I looked straight into her eyes and said, "you thought I was abusing my pain meds". She looked away sheepishly but didn't bother apologizing. I don't know why but she either has no idea of the pain that we suffer with because of the Lupus, or she simply doesn't really care. I do get a tad fed up with people treating me like a street drug addict (and even they need empathy) when all I am doing is trying my best to keep moving and have some quality of life.
1. GabbyFormica Community Admin
 <inline-mention username="Autumn84" user-id="6222036"/>, That isn't a lot to ask for! I'm so sorry to hear how you have been treated by the very people who should be supporting you and helping you get the treatment you need. Unfortunately, it's all too common in our lupus community. We hear you. Sending gentle hugs to you, Gabby (team member)