How to support - Fibromyalgia Video Transcripts
Video 1 Transcript
How to support someone with fibromyalgia is listen. Just listen. Try to understand that they're in pain 24-7. My partner, he's good as gold, he knows I'm in pain 24-7. He knows I will only say that I'm in pain when it's severe pain. Go to the doctors with your, whoever it is with fibromyalgia that needs your help, go to the doctors. Listen to what the doctor is saying because believe me, the person with fibromyalgia, as soon as they get out that door, they will forget everything they have said and they need it. Periods that are going to listen and is going to remember what is said in that room.
Video 2 Transcript
I'm not pointing the camera on me right now because this is my best support. She was with me in the trenches as an EMT. She was a rescue dog and she came out of it with me and is now trained as an emotional support dog and she's my best friend and she doesn't want to be on camera but she truly is the best support. She recognizes when I'm in pain. She's always by my side. She's the first one to come and check on me and she loves me no matter what.
Video 3 Transcript
I think the biggest way that you can support somebody who has fibromyalgia is to be understanding. Some days we just can't. And if you try to push too hard, they'll try to push too hard. And that's not helpful.
Video 4 Transcript
If you're looking to support someone with fibromyalgia, I would say to just ask them what they need. Avoid the, if you need help, or, hey, I'm right here if you need anything, because as someone with fibromyalgia, I will say I'm fine, partly because I have my own hang-ups on being a burden on somebody or feeling that way, but also it's about independence and it's about the desire, the need, the want to be your own person and not be held prisoner by your symptoms. So if you know this person and you're wanting to support, ask what they need. What can I get you? What do you need? And if you know them really well, make a suggestion that you know will help. Hey, can I get you a blanket? Are you cold? Do you need some water? Do you have your medication? Just ask what they need and then get it for them. That is what's been most helpful for me.
Video 5 Transcript
I don't know much because of my own experiences with fibromyalgia, but anybody that needs any support, I'm always here, I'm available. Like I told Alex, with the young women who are raising children, luckily when mine started, I was an empty nester, which makes my life easier. I can lay down when I want to or go when I want to. But if there's anybody, an older person or anybody that needs any advice about it or any help or just a shoulder to cry on, I am always here.
Video 6 Transcript
I think one of the best ways to support someone with fibromyalgia is to do research, ask them questions, try to find out what you can about the diagnosis so that you can try to understand what the person with the diagnosis is going through. I've had people who have insinuated that the diagnosis is made up. That's, of course, the opposite of support. And I've had people who assume that fibromyalgia is just about pain when there's so much more to it. So if you have a loved one with it, just put a little bit of time in and see what you can find out so that you can understand what they need help with.
Video 7 Transcript
I'm on two Fibro Facebook pages and the one is really wonderful. They do try to encourage each other. We're called warriors. We are warriors. We're fighting in an unseen battle and we hurt every day and we're going to struggle through and do it. Find a page that you like or find a support group in your community and just talk because there are others out there who are feeling the same things we are.
Video 8 Transcript
Another way to support. I live with my two teenage boys. I'm a single mom. One of the biggest things I hate is putting burdens on them, but I know I do it all the time. I think it's really important if you have kids that they get onto a system like this to understand other people and how they deal with it and so that they can see that mom or dad are not just, you know, complaining to complain. We have real pain. We have real issues. We hate to ask. And honestly, we usually don't make it out to be as bad as it really is. So when we're saying we're at a 10, we're probably at a 20. So make sure everyone in your house actually knows the facts.
Video 9 Transcript
One thing that my partner does for me that is very, very helpful is that he tells me when he notices symptoms that I might not be picking up. My skin can be very sensitive and he'll point out and say, hey, I noticed you're scratching your skin or I noticed you can't get comfortable. Are you feeling okay? When I might be dealing with symptoms that my brain might not be picking up on consciously that he sees and he'll mention. Another thing that he does for me, which is incredibly helpful is he will stand up for me and support me with my doctors. More than once a doctor has told me that this must not be it or that I must not be, if this were really serious, then this would happen. And he steps in at that point and says, no, no, no, no. She's telling you exactly what's happening. And it's sad that doctors will listen to him more than me. So if you're a doctor, listen to your patients. And if you are the partner of someone going through this, any support you can give to validate their voice and their experiences is important.
