Please Don't Tell Me I Don't Look Sick
How many times have you heard this in your lifetime? I have lost count of some things that people have had the nerve to say to me over the years. Do people realize that this doesn't make us feel any better about ourselves? I wished people could walk in my shoes for one day.
What things have been said to you that shouldn't have been said?
One time I had this man at church tell me that he had a high tolerance for pain. He said this after I explained that I was having major lumbar spine surgery in a couple of weeks. My first PsA symptoms were in my back. He was implying that I was being a baby about my pain and that if I was a tough guy like him I wouldn't need surgery. Never mind that my left leg and foot weren't working so I couldn't drive my shift stick car anymore, and that I hadn't been able to stand up straight for about 10 years. And I was raising two young children while not taking anything for pain except for the occasional NSAID.
When I came out of surgery, my doctor's PA told me that my surgeon didn't know how I was even able to walk at all because of all the damage to a couple of nerve roots. He said that the pain must have been excruciating.
I really hate when doctors do this. I tend to underestimate my pain levels. So when I say I'm a 5 it's more like what most people would consider a 7. But I look totally normal so I've had doctors say that I couldn't possibly be in that much pain all the time. After 35 years of constant, unrelenting pain I've become very good at compartmentalizing my pain.
So yeah, comments about my pain are words that should never be said to me or anyone else .Hello
, You hit it on the nose. Many have no idea of our pain level. Many years ago a doctor literally walked me out the door. Like you said, when you were young, you looked different. But, he accused me of just wanting drugs. Another doctor told me the pain I had was in my head. It took me 25 years to get a diagnosis. I was so happy to have something, which is sad. We have to be our own best advocates and tell our story.
How are you feeling after the surgery? Let us know. Thank you or sharing this with us. This will help people understand that they are not alone.
We've have many of the same experiences, I think. Although being a Black woman makes it even worse. I recently had an experience at the ER where a Black woman was experiencing extreme stomach problems. She had been to the ER three times already. I could hear her stomach from across the room!
Turned out we were the same age and both had several medical problems. She was treated like a drug seeker while I was treated like a queen. The doctor even came and sat with me in the waiting room just to chat! I was livid and ended up filling a complaint based on what I saw. It will makes me angry.
Anyway, my most recent surgery was in 2018. I had an SI joint fusion. Turns out the kind of lumbar spine fusion I had in 2005 is known to cause issues above and below the fused site. Add in PsA and you can imagine the mess that is my lower back.
I did well initially after the BIG surgery in '05. But I was in REALLY bad shape. My left leg was partially paralyzed and I had a significant foot. It felt like my leg was just a dead weight from the hip down. I was 35! Surgery gave me most of the function back in my leg and I was in good shape for about 5 years.
I now believe PsA played a role in how quickly I started to have problems again. And I can remember having flare ups for no particular reason and I think those were PsA flares.
My SI joint fusion was successful but I still have pain from inflammation a few times a month.
I truly wish the doctors had seen my extensive back issues as abnormal. I remember after BIG surgery the doctor said that the main ligament that runs down the spine looked like it what he saw in 80+ year old men who did hard labor for a living. Again, I was 35! That should have been a sign.
It's complicated, you know?Hello
, You are so right about so much. I have been treated like a drug seeker and now I have been treated differently. Good for you for filing that complaint. I am now 65 and have been through things that would bring a grown man to his knees. I have grown now in mind, body, and spirit. I was finally able to find my voice.
I am so sorry that you have had to go through so much, but happy you finally got the help you needed. You are so right, it is complicated, but we will get through this. I honestly don't think we will ever be 100% pain-free.
Keep talking!!!
