A friend in my local fibro support group asked a fairly common question about how you deal with family who just don’t get that your energy level varies, they don’t get that you really DO hurt and that you really DON’T have any energy. How do you communicate your needs when you have chronic illness and those around you just don’t understand?
They respond with the old “aw, we all get a little tired sometimes….” “we all have aches and pains it’s just a part of getting older” attitude.
She asked if she was being selfish, by wanting a little bit more compassion and understanding, even just a “I’m sorry you are hurting” or “here let me help you…” would be nice. We all (including the few spouses present) reminded her that she was not being selfish. That what she wanted was perfectly acceptable and nothing out of the ordinary.
I think we all feel like we are being selfish, sometimes, for wanting something as simple as to be understood rather than dismissed. I know I do. Just those few simple words go a long way to making us feel better. This reminds me a bit of the quote from Thich Nhat Hanh about how “By listening with calm and understanding, we can ease the suffering of another person.”
We had a good discussion in our group about this. The obvious answer is simply NO, we aren’t being selfish by wanting a little more understanding. But, there’s more to it than that. In order for others to give us more understanding we have to do our part.
We have to be willing to speak up, communicate our needs, and be honest about how much energy we have in that moment. We can’t just shrug it off and say we feel “OK” and expect them to understand. Because they can only listen with calm and understanding if we communicate with honesty and openness.
We have to work on communicating our needs, if we expect others to understand them.
They can only listen with calm and understanding if we communicate with honesty and openness. We have to work on communicating our needs, if we expect others to understand them. Share on XOne of the best things that came out of this discussion was Kathleen’s method of helping her family really SEE how she’s feeling each day. Here’s her idea in her words:
Honestly, unless someone is walking in our shoes, they can’t understand the kind of pain and fatigue we experience. But, one thing I did that was a take off of the spoon theory was to buy a bag of marbles. I put them in a tea cup and let my family know to look in the cup each day to see how many marbles were there.
If there were lots of marbles, then I was feeling okay and had some energy. If the cup had a few or no marbles at all, it was a really bad day. It was a concrete way to communicate with them that didn’t sound like whining to me.
I was amazed at how brilliantly simple the idea is. The spoon theory is a great way to explain in general terms what it’s like to live with an energy and pain level that is unpredictable. But, how do you put that in practice so that your family can really see just how many spoons you have that day? Or how many you have left, for that matter?
I struggle (I think most of us do) with answering the simple question of “how are you?” or “how are you feeling today?”. Instincts kick in and the default answer of OK tends to pop out before I have even processed the question.
I’ve had friends ask me “how are your spoons today?” and I’ve never figured out a concrete way to answer beyond “they are good” or “they are low”. I guess you could take Kathleen’s idea and have a cup full of spoons on display for an instant visual, but marbles are a little smaller and take up a little less space. This also gives a whole new meaning to the phrases: “Have you lost your marbles?” and “I’m (he/she is) a few marbles short”.
I also really loved that she pointed out she could do this and not feel like she was whining. So often, we feel like we are whining when we talk about our health. When I open my mouth to talk about my health, I instantly feel like I’m whining (even though I know I’m really not). Especially, when it’s been bad for a while and it feels like you haven’t been able to answer in a positive way in forever.
In addition to figuring out how we can communicate our energy levels, it’s important to think about how we communicate our specific needs. Just because we’ve told our partner or children that we aren’t feeling well or have no spoons that day, isn’t enough for them to really know what we need from them.
We have to be specific. The problem is that sometimes when our energy is low we barely feel like talking, let alone giving someone a list of what we need them to do.
One friend suggested a chart for the refrigerator that had a row of spoons across the top and a list of needs below it. For instance, if your spoons are high you likely won’t need as much help, so the list will be shorter. Here’s an example that I made. If you’d like a template please comment below or email me and I’ll put one together. The chores you list will vary – think about what you tend to need the most help with. You may even want to make your chart editable so that you can list the items that are specific to that day.
These are just a few tips for how you can better communicate your needs with those who care about you. And, how you can ask for the help you need in a way that doesn’t drain your energy further.
How do you communicate your varied energy levels and varied needs to your family and friends? I’d love to hear your thoughts in the comments. Do you have a concrete way to let your family know whether today is a good day or a bad day? Or if you’ve already used up all your spoons and they should probably fix their own dinner?
How do you communicate your varied energy levels to your family? Do you have a visual way you can let them know how you feel and what you need without telling them? Share on XRelated Posts:
Virginia says
Hello, I Am a 51 year old woman who has been diagnosed with fibromyalgia, osteoarthritis, hashimotos thyroiditis, psoriatic arthritis, Trigeminal neuralgia, chronic low back pain, cervical spondylosis, lumbar spondylosis, bone spurs in my shoulders , knees, ankles, feet. Achilles heel Tendonitis, HPB, and so many more diagnose s. Everytime I go to a specialist, they find something else. I get so fatigue sometimes that I can hardly move without being exhausted. I had to quit working in 2011. When I have a good day, I try to get everything done, so people see me out, looking okay, and I hear of them making comments of me looking fine, doesn’t look like I am ill, and how does she get disability. They don’t see me 5 out of 7 days when I am stuck inside my home barely making it from room to room. This upsets me and I get depressed, because I can’t get past the phrases people make when they ask how you are feeling, and I usually say, I am good or I am making it, and they know I had to quit work, so they say the same things…. Old age is hell, everyone gets aches and pains, you just got to keep moving, I have aches and pains too I am not let that stop me, I wish I could lay in bed all day, you can’t let that stop you, etc, etc, etc…. How do you respond to those comments? And how can you make those people who know you understand and help you… Like your daughter?
Julie says
For starters, I’ve stopped responding with “I’m good” or “I’m well” or even “I’m ok”. My response is usually something like “I’m alive” or “a little better than yesterday”. You are right when they only see us at our best and our best looks ok, it’s really difficult for people to accept that what they see is only a facade. A bit part of getting them to accept reality is to show them reality. That doesn’t mean that you spend your time complaining about how this is the first time all week you’ve gotten out of bed, but it does mean reaching out and asking for help on the bad days so that they can see you. Not only do you need it then, but you don’t need to spend your one good day running around stressing yourself out so that it takes 6 days to recover just to do it all over again.
That said, many of the people who make the negative remarks just don’t matter. They never will get it and they really don’t need to get it because they don’t matter in the scheme of things. The only ones who matter are those you love and who love you. And if you love them then be honest with them so that they can help you. If they love you will they will do their best to understand (even though they can never fully understand without living it).
Leigh Anne says
This information is so helpful. I work full time and enjoy my work and Co workers so much. For the past year I have struggled to actually drive the 3 hours a day to and from work while putting in 10 hour days and being on call after hours 7/24 hrs out of each month. It is so frustrating to not be able to keep up with the work ethic I once enjoyed. I feel guilty and embarrassed that I have been requesting to work from home at least 2 days out of the work week. I am very dedicated and compassionate about my work, it’s evident that I need to reduce my work hours and stress level, especially on those days when I just can’t move from pain and brain fog. When you are the main income, it is difficult to cut back and maintain the balance you know is necessary to improve your overall health and well being. Any pointers from those affected in the same way would be appreciated. Note: I am 60 years young
Julie says
Wow! 3 hours each way to work! Then 10 hours of work time on top of that. That would make even the healthiest person fatigued and foggy after a while. You obviously love what you do to keep trying to find any way to do it. Is there any way you can find work closer? Or cut your hours some some that you have time to rest and relax? At least they are letting you work from home, could you do that more? You really have nothing to feel guilty for, there’s work ethic and then there’s beyond work ethic, you have definitely gone over and beyond. You should be proud of yourself, not guilty.
BRENDA M. FLIPPEN says
I agree with Julie,,YOU SHOULD BE PROUD!!! I had to give-up on working in ’97. I think I grieved that more than the fact that I was going to be dealing with this forever. K miss work. I miss the friendships from work. I miss the “out to lunches at work”(and we had a lot ! )I miss the birthday cakes. I miss the jokes.I miss rushing every am to get to work. I just miss it ALL!! And ,,,,,I miss me. 🙁
Julie says
We grieve our loss as if it’s a loss of life, because it is… a loss of the life we know and enjoy. We can find new purpose and new things to enjoy, but they will be different things.
Harriet says
His is a really hard thing for so many of us. Only family and a few friends even know so I always feel I’m dumping on them. On the whole they understand but I did have one say “well some people would be glad to sleep twelve hours a day”.! Grrr I’m pretty good at finding the positives but having terrible sleep that lasts ages isn’t one!
Toni, you’ve probably tried this already but I find showing other people’s writings on this get through to people in a way my speaking can’t. It’s as if it’s confirmation. I do it on the guise of “aren’t I lucky to only get 96 of these97 symptoms works well for me. Might be worth a try.
Good luck
Xxc
Julie says
There used to be a handout from the Fibromyalgia Network specifically written for family. I lies that was great. It’s what I used for my disbelieving husband (who is now totally on board)
Harriet says
Thanks, I’ll look out for that. Those that are close have generally taken the time to find out anyway and as for the rest… Well, at least I know who cares. I have sent your Fibro fog entry on to someone in the hope they’ll stop telling me how to fix this though!
Julie says
OMG! Really? Let me guess, you need to exercise your brain more?
Claire says
Harriet – that is such a good idea!
Toni Dawn says
This is such a huge problem for me, mainly with my mother, who lives with me. I explain this aspect of my illness to her *at least* once a week, sometimes daily – it goes in one ear and out the other. She just does not get it, and I very seriously doubt she ever will. The marbles would probably be helpful with normal family members. My mother, however, wouldn’t pay a bit of attention to it. She’s the kind of person who would tell me where to stick my marbles, if you know what I mean. I love her and she helps me a lot, but she has it in her head that my fibromyalgia is just like her osteoarthritis – and she doesn’t have a clue about adrenal insufficiency. She sees me exercising in the evenings when it’s cool enough for me to do it without passing out, so she thinks I’m just being lazy any other time. Because, obviously, if you can exercise, you can do everything else with no problem, right? It’s unfortunate, but some people will never “get” it, no matter how much we express our needs.
Julie says
Sadly true. Hopefully, one day it will click for her.