10 Ways to Support Someone With a Chronic Illness

[@PhoenixDuval]

this video was super helpful. my fiancé has been chronically ill since march last year, and im caring for him. it can be hard, so videos like this make it easier to know what to do!

[@Chiller-pc1dv]

When I'm having a flare up, I just wanna be left alone to rest, I sure as heck don't want to go anywhere. Usually going out is what causes flareups.

[@Dave_Miller_TP]

Damn. Turns out what I am doing with my friend is according to the books. I was just doing what I was raised to do and just being nice cuz she was my friend. So glad to know I’m doing things right Edit: I swear if she (my friend) comments on my comment I’m going to run)

[@mariambatool2852]

I wish for others to support me, but I don't expect much, so even when they go a little out of their way to help me, I feel immensly happy.

[@DysautonomiaInformationNetwork]

It is tough for us to understand what is happening in our body sometimes, so it makes sense that it is very difficult for other people to "get it". It is great that you are appreciative. I have personally found that asking people for very specific things gets me better results - everything from "it would be great if you could come here instead of going out today" or "if you go past a store, could you pick up milk for me?" to "could you put aside about 15 minutes in the next day or so to help me wash my kitchen floor?" Whatever it is that might be most helpful to you. Just a thought. Best wishes

[@carlsenlifeafter60carlsen11]

That was a really good list. I wish people would do that for me. I hire people to help me. I’ve been in chronic pain for 25 years six spinal surgeries.

[@DysautonomiaInformationNetwork]

Sorry to hear that you have chronic pain. Autonomic dysfunction is fairly common for people with spine issues. Thanks for sharing

[@whendis.roberts9903]

Everyone has something they are dealing with. I do have Post Traumatic Tethered Cord Syndrome and I have massive nerve damage which caused massive Pain from my lower spine to the Bottom of my Feet. So half my Body is affected. I push myself every single day of my life...I push extremely hard.

[@chroniccollectivesupport]

Thank you so much for making this video! It has some great tips for the “healthier” people in our lives who aren’t sure what to do.

[@DysautonomiaInformationNetwork]

thank you so much. Glad the video helped.

[@michelleprather2185]

Great suggestions! Another is to help organize and stock the freezer with usable portions of food for those days when cooking or going out is just too much. Also treat the person to a grocery delivery service or offer to help them unload and put away groceries that are delivered.

[@DysautonomiaInformationNetwork]

Great tip!

[@authenticmslife]

That's a great list! Though I have to admit that most of the time when someone asks how I am, I just say "fine". I hate bringing people down by telling them everything I'm struggling with that day, ya know?

[@AlexiHolford]

But you are “Authentic MS Life”! It depends on who is asking, I suppose, but I would say, take the chance and let them know how you really are doing. As the sister of someone who is in constant pain, homebound and a double amputee, I know how important it is not to isolate yourself. We want to know if we ask!

[@authenticmslife]

@@AlexiHolford haha, yeah fair enough! You're right that it does depend on who you are talking to. A lot of people would be overwhelmed and feel awkward if I really told them the details. But others I know I can be more open with. :)

[@lorettatayor5840]

yes, me too.

[@maguibermu]

I would do anything for someone to help me with house chores would be a Godsend!

[@DysautonomiaInformationNetwork]

Thanks for sharing. I think there are a lot of us that would be happy to have a helper in the house. I know it's hard, but don't be too proud to ask. I have found that asking a few people to do one or two things is much more manageable for people and for me to ask. I don't feel that I'm burdening anyone by breaking things down to smaller jobs. Just a thought. We wish you well

[@vic5421-Rob]

What about when a family member who needs to vent but screams and shouts to others for not supporting them. Should we allow them to vent in that way? It is overwhelming and stressful.

[@SatumainenOlento]

Excellent video! Also, helping with weekly grocery-trip is great stuff!!!

[@DysautonomiaInformationNetwork]

Thank you so much. So glad you found the video helpful. Best wishes.

[@clairehelenswain]

Brilliant video 😊

[@DysautonomiaInformationNetwork]

Thank you so much. I hope it helps.

[@KrisFer2]

I had two small children when I developed severe pots . Just moved across the country for my career. There wasn’t a soul. I don’t have parents . I hired a housekeeper and got my groceries delivered. I parented from a wheelchair , sold my home and sucked it up with the help of my husband . Generally, people don’t want to deal with chronic passing out , comas , line infections , arrhythmias when you are in your 30’s. I get it and I don’t blame them . It’s human to run from a sense of your own mortality when you are young with VEDS. After a while you realize you don’t need any validation or emotional support because you are too busy thinking of your Autistic kid and his immune problems, your iv bags 10 meds , hyperbaric treatments and not dying Listen it’s not fun but you can’t have thin skin and you can’t pretend that mammas coming to help put your make up so you can hang with your supportive friends . After a few years they move on.. Learn to suck it ip and have some hobbies . Be glad when you are stable and be happy you aren’t dead Why ?’ Because that’s what you get and it has to be enough .

[@jessicamaclean6758]

Wow. Harsh but it does help to hear.

[@KrisFer2]

@@jessicamaclean6758 you are enough. It will be ok . Stay strong . Believe in you !

[@emilykrafjack6217]

I’ve had chronic illness since my 30s too. Definitely many friends eventually flee and the invitations stop coming. I also learned I’m responsible to find ways to have enjoyment in my life. Don’t expect an invitation or to be included in social activities because it just doesn’t happen. Find a way to be included if it’s important to the relationship. If it’s otherwise don’t sweat it and plan an enjoyable solo event even if it’s just watching a fav movie you’ve not seen in a while.

[@Chiller-pc1dv]

I understand what you mean, but when you are around others they should be supportive of you, I mean geez, being supportive is kinda the bare minimum. This video has nothing to do with "momma coming to save you" I don't at all think this is being thin skinned.

[@KrisFer2]

@@Chiller-pc1dvI think the gap is between the should and reality . That’s where the cbt and meditative therapy along with self care through hobbies close the gap . Once you find your lane you just dive into your own path and it’s great . Admittedly I had resources to make myself better that most don’t have, and that is quite sad for those that can not pay for integrative or foreign care . Know there are European studies happening at present that eventually may trickle into the forefront . If you don’t have a segmental compression pump and an oxygen bar I’d recommend those as a nice start .

[@shmoser1122]

Thank u 🙏😇

[@DysautonomiaInformationNetwork]

Always welcome

[@PhoenixEvolution]

I hate people checking in on me and grossly affects my PDA

[@zuridelgado4944]

I want to pass this on

[@DysautonomiaInformationNetwork]

Please feel free to share the video link. We also have something you can print on our website - www.dinet.org/info/pots/understanding-dysautonomia-a-guide-for-family-friends-r153/ You can print or email the article to share as well.