If you have a spouse or loved one living with chronic pain or chronic fatigue, you may feel useless at times because you can’t ease their pain, you can’t make them physically feel better.
Often you want to do something or at least offer advice just in hopes that it might help them feel better. Often, doing so backfires and your advice just frustrates the person you love, making them (and you) feel even worse.
There are some things you can do to help, things that will make them feel better (at least mentally) and will help improve your relationship with them.
1 . Accept that their illness is real – The number 1 thing that you can do to help someone who has chronic pain and fatigue is to accept that their illness is real.
This is often difficult even for them, especially if they suffer from Fibromyalgia or CFS where the pain and fatigue are real, yet there is no test that can provide an explanation for the pain and fatigue. Its’ hard enough for those of us who suffer from these disorders to accept our own diagnosis; although, we have no problem understanding that our pain and fatigue are real.
For those around us, the lack of definitive tests only increases the likelihood that they will at least wonder if our symptoms are real or just “all in our head”. It’s not all in our head, it is real.
If you love us you will accept that. Letting us know that you believe our pain is real will go a long way to helping us feel better mentally, to allowing us to trust you, so that we can ask for help, and towards keeping us from falling into a depression that often comes along with the pain and fatigue.We know it's hard for you to accept our illness is real, we question it, too. #Fibro #CFS
2 . Listen to them – We know you get tired of hearing about our symptoms, because we get tired of talking about them.
The problem is that if you don’t hear about them you are likely to forget that they are still going on. And, if you don’t ask about them, we are likely to not tell you. We don’t want to burden anyone, so very often we keep our thoughts, fears, and pain inside. We share it with no one, not even those closest to us, unless they ask – and often not even then.
Please do ask us how we feel, in a sincere way so that we know it’s more than just “how are you today?” question that no one expects an answer to. And, when we avoid answering, please do let us know that you really do care and really do want to know. If we respond with something similar to “I’m ok” or “I’m fine”, hug us, hold us tight (but not too tight) and tell us that you know we aren’t and that you are there to listen should we choose to talk.We know you are tired of hearing about our pain, we are tired of talking about it.
3 . Don’t push advice on them – We know you just want to help, but it can be truly infuriating to have someone who has no idea what we are experiencing giving us advice. We get that with doctors all the time, to get that from someone we love just feels insulting.
If you’ve really made an effort to try to learn about our illness, our symptoms, and possible treatments, yes we want to know what you’ve learned. Just don’t push the advice. Present it and leave it for us to review in our own time. It’s likely that we’ve already seen the information you’ve come across in our own research.
Quite often we know way more about what is available than even our doctors do. By simply presenting the info “I ran across this info and thought it might interest you” and then walking away from it. We know that you care enough to think about us and to research what we are going through, but we don’t feel like you are treating us as if we are stupid.
4 . Ask how you can help – We know you want to help, and at the same time we are terrible at asking for help. So, despite knowing that, we won’t ask.
If you want to help us the best thing you can do is remind us that you want to help, by asking us how you can help. We will likely say we don’t need help and dismiss the offer. We’ll do it repeatedly, because we don’t want to be a burden; however, if you keep at it eventually we will break and we will let you help us.
Think of specific ways we might need help and offer to help in those specific ways. “Can I give you a ride to the doctor?”, “Can I bring you a meal?”, “Can I come clean your house?”. We are more likely to accept specific offers than general ones, because often there’s so much we need that we don’t know where to start, and we’d never ask you to come clean our house, but if you offer….
5 . Learn about their illness – Taking the time to learn what we are going through shows that you really care about us and want to understand. If you are reading this post it says a lot about how much you care about someone, because it shows that you want to help.
Research the basics of the illness your loved one is living with. You can never truly understand their pain and fatigue (unless you have it, too), but you can make an effort, and those efforts count.
As you learn feel free to ask your loved one about what they are going through. Share with them what you read and ask them if they feel it applies to their situation. Present them with this post and ask them if doing these items would help your relationship. Get a discussion going with them that is real. That would go a long way.You can never really understand what someone is going through, but I appreciate that you are making an effort to try.
6 . Know their medications – If you live with someone with chronic illness, or if you are in the position where you might be the person they call to take them to the ER or to the doctor, know their medications (or at least know where you can easily access a list in an emergency).
If anything happens and they need help getting to the doctor or to the ER they may not be able to remember their meds, or even where the list is. It’s important that those who love them have access to their list.
I know these tips are just an overview. You may also want to read 6 Things we wish healthy people could understand. You can never really understand what we are going through unless you are living it, but we appreciate that you are trying.You can never really understand what we are going through unless you are living it, but we appreciate that you are trying.
This is a great list, I’m definitely sharing with my spouse! He’s pretty good, but I hadn’t thought about him needing to know my medications and he really should know that.
I try to keep a list updated on my phone (using drugs.com) so that he can at last pick up my phone and open that app and hand it to someone. He also knows where I keep all my drugs/ supplements so he could pick them all up if needed.