A lot of the time when someone says they’re tired or that they have chronic pain, it can be hard for the people closest to them to take that seriously. Supportive and kind words from a loved one can greatly benefit someone who lives with a chronic condition like fibromyalgia.
Unfortunately, it can be hard for someone who doesn’t have fibromyalgia to understand what the right thing to say is. Someone could have the best intentions in the world and still say something hurtful.
Fibromyalgia is a condition that causes aches and pains, specifically in your muscles. It can cause a wide variety of other symptoms including fatigue and cognitive issues. Living with fibromyalgia can be difficult, but having a supportive loved one beside you can make tough days a bit more manageable.
To help you and your loved ones communicate better, we asked The Mighty’s fibromyalgia community what they wished their family and friends would tell them more often.
Here’s what our community wishes their loved ones said:
1. “That they believe me.”
“‘I believe you’ would cover it. I’ve had Fibro for five years now and I still get, ‘She’s probably just being dramatic.’ This was said very recently, after a ridiculously long and hard journey where no-one believed me at all, doctors included. It hurt so much I cried for days because I thought my family was finally starting to understand I have a chronic illness, not just ‘making it up to get attention.’” – Lizo W.
“I have blood relatives that don’t believe I have anything wrong, that fibro isn’t real, that I’m just lazy… Instead of thinking these things without learning about fibro, I wish they would say something like, ‘I don’t understand what having fibro is like. Could you tell me about it?’” – Jennifer B.
“Definitely something like ‘I believe you, I care about your struggles, and I want to see you thrive.’ No one believes I have fibromyalgia, even though I’ve been diagnosed. I hear people’s eyes roll into the back of their head when I talk about it. It’s frustrating because I just want to be believed.” – Sydney D.
2. “That they know I’m not just being lazy.”
“[I wish they said] ‘I understand that what you going through and you are not being lazy. I am proud of the effort you are making to make it through the day.’” – @smo2
3. “That they’re there for me.”
“I wish they would say, ‘Hey you’re handling this well, I know this is ridiculously overwhelming and I’m glad you’re staying positive, but when you get overwhelmed, I’m here.’” – @dragonfly
“[I wish they would say that it’s okay. ‘I know you’re struggling. I know you’re doing the best you can, I’m proud of you and I’m here to support you.’” – Aimee L.
4. “That they’re bringing me food.”
“I love to hear, ‘I can help you do that,’ or ‘I can drop off food for you so you don’t have to cook.’ It shows they understand how hard the little everyday things can be. And let’s face it, we need to eat and cooking is a load of work when fibro has kicked up. So that little gesture speaks volumes of love.” – Kim S.
5. “That we can still spend time together.”
“‘You can’t make it tonight? No problem. How about I bring over dinner and we watch a movie?’ I miss my social life, but I rarely bother making plans because I’ve had to cancel so often and people get so mad. I would love for a low-maintenance friend or family member to come keep me company when I don’t feel up to going out.” – @alaskancourtney
“[I wish they would say I’m] invited or informed of family events or special events with friends. That someone would just text or call and ask me what they could do to help me attend the family event or special occasion. Since I have not been able to attend so many events with family and friends, the calls just don’t come and when I find out the event happened, it feels like I am no longer welcomed. It hurts deeply. I know it is my fault for being sickly and not knowing how to communicate to others that I still wish to be invited.” – @vindicatedplum
6. “That they’ll handle things for me.”
“‘Let’s just take it easy today,’ or ‘I’ve got this.’ Often times I find myself trying to do something that takes too much out of me on a hard day. Things for someone else, just to make them smile, or things that just need to get done. It would be great if when my family or friends saw me struggling to do something, they recognized it and tried to make it easier.” – Pamela T.
7. “What they can do to help.”
“I’m sorry you’re having a bad day. Can I help?” – Diane F.
“I’m sorry you’re going through this; feel free to ask for help.” – Jeannette D.
8. “That they know I’m trying.”
“That they admire how hard I try, how much I do and that I never give up, despite my chronic illness.” – @lizzieliveshere
“It would be really helpful to hear that they know how difficult each day is for me and that they are proud of me for still pushing through.” – @sommerc
“I wish my loved ones would recognize the strength it takes to live every minute with this disease. I wish they can realize that it’s through strength and determination that I function as well as I do and am able to smile, laugh and be the person I am around them, that it is hard for them to ‘understand’ a disease that SO MANY are still just learning.” – @relisham
9. “That I don’t have to push myself.”
“[I wish they said] that they understand and believe me when I say I can’t do anymore and not be told to push myself more or force myself to keep going.” – Jeannine C.
10. “That they don’t mind taking care of me.”
“What I need to hear especially on my real bad days when I can hardly even get out of bed is for someone to tell me they love me, they are here for me to take care of me and do what needs to be done until I feel better, just rest and not worry about a thing! That would be the greatest gift because stress and worry make fibro flare-ups even worse. I used to try and fight the tiredness and pain with all I had, but it keeps getting worse and worse. Now my body will just about shut down! I have no choice but to stop and go to bed no matter what is going on or what I might miss out on! No one understands and some just call you lazy and that hurts deep!” – Nikki E.
11. “That they’ll make that phone call for me.”
“Even though my family is extremely understanding of me being in pain all the time and not always able to get the housework done, sometimes I would like to hear, ‘You know what, I’ll make that phone call.’ Instead of, ‘Will you call this place for me? Your home all day you have time.’ I absolutely hate making phone calls. I sometimes forget who I’m calling or why and I feel like I have to scramble to figure out what I’m doing. It’s hard enough for me to remember to make my own phone calls for various doctor’s offices, and I make calls for them too and I just wish sometimes they would just make their own calls. It can be so nerve-wracking.” – Krystine S.
12. “That I’m still important.”
“I am not going to dismiss you because you cannot be as active as you used to be. You are just as important as you ever were. We love you and believe in you.”
13. “That they’re coming to visit me.”
“I live alone and am divorced with two adult children. I have one brother who lives in another country. I wish my loved ones (children) would say, ‘I’m coming to see you so you know you’re not alone and that I love you.’ I wish my brother would say, ‘I’m coming back to live close by so we can see each other a lot. I love you sis.’ I’m crying just thinking about it because this crippling illness is so isolating. I feel so alone.” – Colette R.
14. “That they’ll speak up for me.”
“I wish someone would advocate for me. Some of my friends are incredible. They support me even if they don’t completely understand. I’ve had fibromyalgia for decades. Just once I wish someone would say, ‘Leave her alone. She can’t control it.’”
15. “That it’s OK to be myself.”
“‘You don’t have to pretend to be okay.’ No matter where I go or who I’m with, I hide my pain to make THEM feel better. I’ve found that my being in pain makes other people more uncomfortable than not, so I put on a cheery face and put all my energy into seeming fine. I often pay for it at least for a day after, if not longer. I’d love to spend time with someone other than my husband who could say, ‘You don’t have to pretend.’ And mean it, and just accept me as I am, even if it’s not my ‘usual’ cheerful self.” – Allie H.
If you are struggling to feel heard, please reach out to someone you trust. There are support resources available. You can also join The Mighty’s fibromyalgia communityand share your experience. You are not alone.