When a friend or relative says to you…

“You can talk to me about your pain.”-“Tell me how you are feeling.”-“I’m here for you.”-“Maybe it would help you to talk about your pain.”-“If you didn’t keep your thoughts pent-up, you may feel better.”-“How am I to understand what you deal with if you don’t communicate with me??”

… and so, you reluctantly open up and express how the pain makes you feel; from sun-up to sun-down and all night long. 

They stare at you.  You continue…

“When I wake up in the morning, I feel exhausted before I even rise, my pain is literally from head to toe, on varying levels. It is all I can do to get out of bed. It is challenging to get going. I will myself to do my morning stretches, because I know it will help me maneuver the day better. Throughout the day, I need to keep moving so my body does not lock up; I am still hurting with every move, though. I do my best to keep a positive attitude and a smile on my face, to hide how bad moving can be. Resting is important, but it is like starting the day all over again when I need to get up. I keep moving to keep the pain levels down, but the pain never goes away.

“I feel tired and worn out all the time no matter what I do.  I get these electric-like jolts that attack my head, sometimes my hips or back, randomly, and without warning, making me look like a scene from the movie ‘The Jerk.’ In the morning I may hurt in a different place than the afternoon. I may have a swelling knee at noon and the inability to walk by 4pm, lack of dexterity in my hand(s), back pain that doesn’t allow be to bend over, plantar fasciitis may rear its head again, or my hip may fail me, or a completely different issue between it all.  I NEVER KNOW. The migraines are the worst, though. No warning and all-consuming.”

You continue on, likely sounding like a complete hypochondriac, but knowing you are not. You shock yourself with how bad it all sounds in the first place, but, because they asked you to share your pain with them, you continue on, spilling open your vulnerable heart.

They seem to be listening, and then…

Instead of the compassion and sympathy you might have expected to receive, they start telling you all of the things they think you should be doing, haven’t done, need to try, because they just KNOW that what you are going through must be blown out of proportion, or your pain tolerance is weak. 

“Perhaps your pain is caused by the detergent you use, or your shampoo, or the candles you love, maybe it is what you eat, or what you don’t… lack of exercise… how you exercise… not enough sun… too much sun… You need to take these vitamins and stop taking those… ‘I’ve heard microwaves may do something…’ You need to try this…, Oh, have you tried that? …”

… and on and on and on as you sit there, getting anxious, irritated, and your body starts to stiffen up, causing you even more body pain… pain that you would never mention after this conversation… and now-emotional pain, and you stifle back the urge to cry while you silently beat yourself up for saying anything at all in the first place… 

You know they mean well… (or do they???) …

… and then… they, (with no arthritic or health issues at all), begin to tell you how bad they can feel in a day just being alive (clearly stating their pain was worse when they bumped their elbow that morning), or how tired they are all-day-long, and they “GET IT” (anyone who has had a similar conversation knows exactly how irritating that “I Get It” can be, especially from a person that has NO CLUE)… and you interrupt them and ask ONE question…

“Have you ever read up on Fibromyalgia or Lupus?”

… and their response is…

“Well, no, not exactly.”

… and then…

… you say, “How can you sit there and try to give me advice when you have NO IDEA what you are even talking about????”

and then… you realize you’ve become a victim, and you vow to never expose yourself like that again. You feel robbed of your person, exposed, judged and helpless. 

At this point the conversation becomes useless and bothersome, and you end it-immediately (which probably should have ended before then, anyway).

So, unless someone has researched these conditions and tried their best to put themselves in your shoes and not just listen to you, but hear you, empathize with you in their heart, give you a gentle hug and be the friend they “claim” to be, they have no business asking you to open up and then unleashing all the words that don’t help. 

Anyone… I mean anyone, who researches Lupus and/or Fibromyalgia should be empathetic to the sufferer’s plight and realize it’s not environmental, lack of this, lack of that, etc. 

Toxic people do not help sufferers of Lupus and Fibromyalgia. Purge them from your life. 

If you have a loved one who suffers from Lupus and/or Fibromyalgia, be mindful before you ask them how they really feel. Do your research on these conditions first before you open your mouth. 

God Bless-

The Fibro-Lupus Momma of Ten