Advocating for ourselves is an important part of self-care. We need to speak up for ourselves and stand our ground. We need to stop letting people tell us what we should be doing to get better, because although their heart may be in the right place, they don’t really know what we go through.
So, how exactly are we to get the courage to do that?
It’s particularly hard if we are people-pleasers by nature. We don’t want to rock the boat. But we are being untrue to ourselves if we aren’t honest about what we need and what we don’t want. People-pleasers find it very hard to put themselves first. Think about flying. The flight attendants always say to give yourself oxygen before helping someone else. As someone struggling with fibromyalgia, we need to put our health first!
I know it’s much easier said than done, especially in the moment, but we really need to just shake off the negative, ignorant, uncaring comments of others. Speaking up for yourself and practicing self-advocacy can and should be done with love — FIRM love. Don’t be apologetic; you have nothing to apologize for. You did not ask for FM, but since you have it, please learn to advocate for yourself. It’s not selfish, it’s self-protective.
Find people who love and understand you to “practice” self-advocacy on. Do some role playing so that when the actual events happen, you will know how to handle it, using a grace-covered mallet. You do yourself a grave disservice by keeping quiet and suffering. It will add to your stress and cause an increase in pain and potential flares.
Speak up for yourself with your medical professionals. Don’t settle for less than you should. If your doctor doesn’t believe you, or isn’t as supportive as you need them to be, find someone who is. Be your own advocate. Trust me, they are out there and you are worth it. You need to be an active participant in your healthcare. That means asking questions and being very specific about your symptoms and concerns. Bringing someone with you to take notes can be really helpful. You need a doctor who will take the necessary time with you.
There are lots of fibromyalgia forums and support groups out there. Join a few and get some feedback from those who truly understand. You will feel less alone and more empowered.
Do it for YOU!
Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.
There is so much YES in this article. It is off putting some of the comments even from healthcare professionals. I would be blown away when a doctor would say to me that I look pretty good to be sick. What kind of nonsense is that? I now have a counter response to that, I ask if they look different when they get a headache. Everyone can relate to a headache but you look great so clearly your head can’t possibly be hurting right? Like you said, we must advocate for ourselves and with our healthcare providers its much harder because we hold them in high regard but sometimes, they are just as foolish as the general public so I like the idea of role playing. Great suggestion because there have been times when I have just been left with my mouth hanging open with no words.
Thanks Kellie! Doctors are not infallible, unfortunately they don’t have the education to deal well with chronically ill patients in a compassionate, understanding way. It’s just sad
They want to most do not know how to unless they are a patient them self. Then, they can see it from the other side of the problem.
it is not as much education as it is temperament, they think fast and react too, fast most times and should have been taught to listen, because they know a lot, but have much to learn from a chronically ill person, who has been there many years, with little help from a doctor.
I agree that they lack in listening skills, they should ask a question and then just truly listen
What a wonderful comeback! I’ll have to remember that one!
Robin,
I have a question before my apt next week. I have had Fibro forever and diag since 1999. Lately I have noticed that I have had trouble lifting my arm when I need to. The other day I tried to put something up in the cabinet, my brain told my arm to lift but it didn’t. I tried from my shoulder, but it wouldn’t. I tried using my arm muscles, but it wouldn’t. It scared me. Is this a Fibro thing or is there something else here?
Hi Terri, was there pain involved or were you just unable to lift your arm? I would definitively talk to your dr. about it. I have issues with both my shoulders, frozen shoulder and bursitis, but it’s painful, especially if I reach out, up or behind my back. It makes it really challenging to do things
That’s what scared me! There was no pain…..just no response! It was as if there was no communication to the muscle at all! I have frozen shoulders that are really painful and pop when I do things but this was as if the muscles just said “nope…not listening”.
I’m not sure what would cause that, scary for sure ?
I will discuss with Rheumatologist and go from there. Not looking forward to this one!
Please let me know how it goes
I talked with the Rheumatologist yesterday. She is referring me to the neurologist for the issue with my arms. She said she things this is not a fibro thing but must be evaluated by the neurologist. It will be a few weeks before I see the neurologist so will update then.
Yes Terri, please keep us updated ?
I am not advocating to take certain actions without seeing a neurologist first for a work-up; but, I experienced something similar in that I encountered difficulty sometimes in swallowing – actually having to take a minute and think about swallowing. I went to a neurologist and bloodwork results showed I was deficient in B6. My body for some reason was not absorbing it and now I take sublingual B6 tablets(made to dissolve under the tongue). I hope that you are able to find the source of the problem soon; til then take care!! Pls keep us posted, if possible!
Lori,
Strange you should mention that! At times I have the same issue. I have to really relax and think about it in order to swallow. I thought it was due to a dry throat but now that you mention it….hmmmm. Maybe that is something I need to put on my list to mention tomorrow. Thank you!
it is not as much education as it is temperament, they think fast and react too, fast most times and should have been taught to listen, because they know a lot, but have much to learn from a chronically ill person, who has been there many years, with little, help from a doctor.
TO: Terri: that is the first question my doctor ask me can you pick up a skillet when cooking in the kitchen and I said NO. That is part of the Fibro. The test proved in about 2002, I had, had much longer but it was getting worse and no one until then had given it a name.
Many times I’ll just say I have arthritis and leave it at that, depending on the person of course. I find the older generations to be more understanding.