It can be frustrating when we need help, but don’t want to accept that we need it, or even harder, don’t want to put that burden on anyone else. Thankfully, as someone who lives with chronic illnesses that make normal activities hard, I can say there are people out there who genuinely want to help others.
Some people have the best of intentions, but don’t know exactly what to offer, or they just want to do something different, maybe, than what others have offered. When offering any support, word choice can really determine how comfortable we feel accepting your offer. I want to note here that this isn’t about not being appreciative that anyone at all is willing to help us.
You probably can’t imagine the appreciation we feel when people help us. You also probably can’t imagine how hard it can be to articulate that appreciation when we are in the midst of the pain of our conditions, or overwhelmed by your kindness, or feeling embarrassed that we needed your help at all.
Emotions can be strong when you live with an invisible illness, and unpredictable. The last thing any of us want to be is a burden to those who care, so if we feel like you’re being inconvenienced by offering, or are just doing so to be polite, we’ll likely thank you, but say there isn’t any need for it.
Even if we’re drowning in everyday tasks like laundry and dishes. In my case, I’d rather hurt myself everyday doing what I need, than have someone help me that doesn’t really want to help, or be given “help” that doesn’t really help me. I’d really prefer if people wouldn’t offer just to be polite, or to have something to say, because it’s very rare that I can’t tell.
This is why how you offer your help is very important. The following are ideas for things to do that may be helpful to someone with a chronic illness. I’ve also included a way to ask each that can make it a bit easier for the receiver to accept your offer, because the wording will make them feel like you want to help them.
Offer to clean FOR them, without judgement or expectations of them helping at all.
Instead of saying: “I’ll come help you clean,” “Do you want me to come over and clean?” try saying: “I’m coming to clean FOR you, on either Tuesday, Thursday, or Friday- whichever day works best for you. All you need to do is point me to a room, tell me any special instructions, and then go relax.”
I say this because when you say “I’ll come help you clean,” that means we’re going to have to be able to function when you come, and it can be really hard to know when that’s possible, so we’ll usually just say something like “Oh, that’s ok, I’m getting it handled,” or “Oh, Thank you so much for the offer, but it’s not necessary.” We’ll often do the same if you begin your offer with “Do you want me to….,” because it may seem to us like you’re just being polite.
Also Read: Tips to household chores to avoid fibromyalgia flare
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It’s not that we’re ungrateful, or thinking the worst of you. It’s because we have to live with feeling like we aren’t doing enough, and the guilt that goes along with that, all the time, leading us to feel like we burden those we love. We’re only trying to avoid those feelings, and actually being a burden.
If you’re really wanting to help someone without making them feel like you’re just being polite, I suggest using the phrase I mentioned above, or saying: “Hey, I’m coming to do whatever-task for you,” to which many will reply: “Oh, you don’t have to,” and then you can tell them flat out that you WANT to.
Occasionally, you’ll run into someone who really doesn’t want any help, and in those cases you should respect their wishes. If you offer using something similar to the word choice I’ve suggested, you can at least know you did your best to make them feel comfortable accepting your help. The key is to make sure your words imply/support that you WANT to help them, not that you’re only offering to be polite.
Related: Some Helpful tips for cleaning and organizing when you have fibromyalgia
Go to the store for them. It can be a hard thing for us to accomplish on a bad day, and going will keep us from performing several other tasks, so any time we can avoid it is great.
Try using phrasing like: “I’m headed to the store later, thought I’d see if there is anything I can pick up while I’m there?” or: “I go shopping on Thursdays. If you make a list, I can pick up anything you need.” Either of these examples help us feel okay accepting the offer because: a) it gives us some time to remember what we need in each scenario, and b) You’re making it clear it isn’t a trip just for us. We don’t feel so bad about letting you help if you’re going there anyway.
Reassure the person you’re trying to help that the amount of items isn’t a worry by letting them know that you shop all over the store anyway. There are times I would leave things off a list because I didn’t want the person having to walk all the way to the back of the store. Find a way to let them know that you’re willing to get whatever they need, and it’s not too much trouble.
Store specific apps can be extremely helpful for this particular task. Many of them now have all their items listed in the app, along with their prices, sales and coupons. You can have the one your helping use the app when making their list so it’s almost like they’re getting to see the items in person.
Pay something on a bill, or give them a prepaid gift card that can be used anywhere so they can apply it where needed.
When you have a chronic illness, that means medical bills, at the very least. It may also mean you can’t work, so finances can get very tight. Even if the person is great with money and does everything they can for income, medical expenses can keep them broke. If you’re able to, and really want to help, relieving some of the financial strain can be one of the most helpful things to do.
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Some people may not want to take your financial help, but there are ways around that, if you know they need the help. Many things involving money can be handled anonymously. Some companies used to have programs that would allow you to pay on someone’s bill without having their account information.
Many places have changed that because of privacy policies, but it’s at least worth checking into for whichever company you want to make a payment to. If you can’t find a way to do it through the company anonymously, slip cash or a prepaid card into an envelope and make sure its left somewhere only they will receive it. Unless they’re rich, it will relieve some of their stress.
Watch their kids so they can have some time to relax- on a regular basis.
Many people with children may already have the wording of this one down pretty well. If you’ve been that tired parent, and see another, you’re more likely to offer some sort of help. For parents with chronic illnesses, feeling like we aren’t doing enough for our kids, or running ourselves ragged to get it all done, are both common occurrences. If we feel like we’re “pawning them off” on someone, we won’t want to accept the help, but the fact is, a chronic illness never goes away.
Some of us are in pain and exhausted everyday, no matter how much sleep we get. Daily self-care can be extremely beneficial in managing our conditions, but we often don’t have the time to do so, especially if we’re parents. The best ways to offer this are to make it as much about the kids, or a routine, as possible. Try saying something like: “Annabeth needs to socialize more, why don’t I come get Isabel every Thursday so they can get together?” or: “You’re right along my route to school, and the kids need to make friends, how about I pick them up/drop them off everyday?”
Related: Developing a daily routine for fibromyalgia
Depending on how much time you can/want to devote to helping, adjust these suggestions to suit what you can offer. If you can’t really manage doing something on a regular basis, offering to help from time to time can still relieve some stress, so don’t let the above suggestions deter you from making suggestions for random play-dates that get them a couple of hours of free time.
Something else to consider when offering childcare- you should be doing your best to make arrangements for all their children if you really want them to be able to make use of the down time. People often forget about kids in the home that aren’t close in age to their own because they may not be as familiar with them. If your goal is really to help, try to include everyone so that feelings aren’t hurt, and the one you’re trying to help gets real rest.
For those who seem to have everything covered, offer emotional support. Sometimes, we just need someone who is capable of listening and really wants to understand.
There are some who have things covered physically, either themselves, or by others helping, and even financially. They may seem to have everything under control. In those cases, I at least offer to be someone they can vent to that isn’t going to compete with them, or say they can be easily fixed, or anything else. Sometimes, you just need to vent. I have had this experience myself plenty of times, so I offer to be there for others who may need it.
Many times, I’ll just let them talk about whatever they want without really offering up much, if I’m trying to simply let them vent. I’ll only offer up information if they say something that they’re actually needing or wanting to know. To offer emotional support, I usually say something like: “I know what it’s like to need someone to talk to that won’t judge, and isn’t involved. I’m here if you ever need to vent.”
Sometimes, I’ll add that I’ve experienced similar or throw in a detail that lets them know I really will understand and not judge, like: “My kids are 12 and 18, if you ever want to talk. I know the teenage years can be some frustrating times,” or whatever is relevant to what they seem to be experiencing. All five of these things give you a way to offer your assistance to someone you’re wanting to help, with the best possibility of them accepting your help.
Please remember, there are the rare people who just don’t want to be bothered, and as people who want to help others, it’s sometimes hard for us to accept that. We have to respect those people, too, because continuing to keep on them about letting us help, can also cause more stress. It can be a hard situation to gauge, but just be aware that it can happen. Offering the wrong kinds of help can also add to our stress level considerably. We constantly deal with people thinking we just haven’t tried hard enough to fight our conditions.
Unless we’re having a discussion about treatments (that we initiated,) and it’s clear we aren’t aware of something that exists, it’s not appropriate, nor helpful, to offer up suggestions of exercising more, yoga, meditation, diet, or anything similar.
If you’ve encountered a recent article about a new development in our condition- that’s great information, and helpful. Or, maybe there is a book you know of that discusses our condition- that can be helpful, too, but only offer suggestions. Don’t try to say it will cure us. Chronic conditions are CHRONIC. There isn’t a cure, there is only the management of symptoms.
Another thing you should NOT do when offering your help is to compare our pain and symptoms to your own (unless you have the same condition, even then, all bodies can be different.) Please don’t say things like:
“Oh when my muscles hurt, I just stretch and take a hot bath, and they feel so much better.” We desperately wish it was that simple. If it was, we wouldn’t be struggling so badly. Unless we are very new to the pain and diagnosis, we’ve tried all the normal remedies, and tend to get exasperated when people keep suggesting simple things.
These two examples of what NOT to do, along with the other examples of how not to offer mixed in with how to help in ways we’ll feel comfortable accepting, should definitely give you some guidance if you’re really wanting to bring someone relief. Your help is needed, and appreciated, when done in the right way. For the majority of people with invisible illnesses, we’ll probably try to make sure we’re not burdening you, but the relief your help will bring, will be so very needed.
Thank you for being willing to read through this for the best ways to offer your help. More people who truly want to help are needed. Some with chronic conditions don’t have anyone in their lives willing to do so. Seek them out, and any loved ones you may have that are struggling with their health, and do what you can to make their lives a little easier.
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