Hi there it is very hard to do. I had a 80 year old mom who no matter how I explained I heard from others what my condition was and it was all wrong. My mother in law who is now 85 does not understand. she is panicked about marijuana coming to the state. she thinks everyone is going to be a pot head to quote her. I tried to explain I even showed her my marijuana and told her How I make it into tea. Still she doesn't understand.
Maybe younger people would understand. but when I was having nerve blocks and one of them went with me to drive me back and forth , they new it was very painful to watch but never understood why I went through that.
I wish you well I never got that figured out. I am just glad my husband understands and helps me out all the time. Best of luck gentle hugs casey.

They are both in their 60s. I'm not sure if it's because they don't see my day to day or have been basically absent for the first two years of my injury/condition or because they just don't. It's just so frustrating.

It's hard for others who don't live with CP 24/7 to understand the challenges that we face on a daily basis. One of the best analogies that I have heard is the 'Spoon Theory'. Type it in under the search and I'm sure it will come up. It doesn't explain the pain but does tell of the modifications necessary on a day to day, hour to hour basis while living with a chronic condition. Hope this helps :) xo Lyn

Support-wise, what are you looking for from your dad and stepmom?

In my experience, it’s futile trying to get others to “understand what it’s like.” I’ve had (slightly) more success with laying out my limitations and needs in concrete terms.

I was looking for them to come with me to a procedure. But my dad didn't think I was doing things the right way or thought his way was best and emailed my doctor about referring me to a doctor that's closer to them in San Diego. He did this without my approval which resulted in my being rescheduled two weeks later. We've had a huge fight about it where I put boundaries down and told him I just need his love and support, I explained that I don't need him to try and fix things I've already been handling for almost two years. He didn't really respond so I decided to have one of my brothers go with me instead. He took this bad as well, saying some hurtful and untrue things to me. I again explained that I am doing what's best for me and that his actions are causing me pain. He apologized and said 'take care'. I don't know what to do now, I don't really have energy to try and find another way to explain or help him understand what I need.

It’s very hard to be in chronic pain & can almost feel like an abandoned feeling when others don’t understand. I just wanted to let you know I understand. Chronic pain is a very big struggle & sometimes it seems to me that a lot (not all) but a lot of people don’t really get it unless they’ve gone through it. It sounds like you are doing the best you can. You put down boundaries & made clear how you feel, so you did everything you could in that regards. It’s up to him from then after, so try to give yourself a break as far as that’s concerned. Especially like you said if you don’t have any more strength for that, save your strength for all the rest you have on your plate & I hope that the rest falls in place eventually. It sounds like you are doing a good job at trying to take care of yourself.
You are not alone, I’ve been in chronic pain for a long time. We can only do the best we can & take it by moment to moment. I hope you get some times of relief in your future.
Sending you pain free hugs <3

G'morning and I hope this finds you having a relatively pain free day. As I mentioned before, The Spoon Theory does an excellent job describing to 'others' what it's like to live with a chronic illness, one in which you always hear' But you don't look sick'. Google this article. I guarantee you will feel validated. It just might help your family understand where you are coming from. Hang in there, xoxoLyn

hi again,
It funny when you said your parents I was thinking 75-80 year olds not people close to my age. I am 58 . Well anyway I live with chronic pain and I can't even get my kids to understand it. so it has to be an issue with all ages. No matter how I explain it, after about three words they get the glazed over look. I am sure if I texted it maybe it would sink in. For your parents I would say it's best to write it down . Dr. Hoosmand in California has an amazing way of explaining chronic pain.
When I was going into surgery he called me directly from California to Canada, and told me don't do the surgery it hasn't been proved yet. I didn't listen and I ended up being paralyzed.it took me ten years to be able to walk with a cane. I get the look all the time . Why are you in handicapped parking. Well maybe because I cannot walk a long distant after trying to walk around the grocery store with my husband. it's even hard to get him to realize I live with pain daily, sometimes it's better but mainly it's not. when I have a low pain day I over do it all the time. Because I know I have so much I want to do. sorry for rambling.
invite your parents over , and sit down and show them your meds, and tell them what each one does for you. After that they will realize you live in pain. Now you tell them I really need your love and support to help me get through rough days. I am not asking you to try and fix the problem. I am handling that. But what I need is a shoulder to cry on. Maybe help to do something. Like wash my car carry the laundry downstairs.
your dad loves you he is feeling helpless so he was doing all he could do to try and help you. He wasn't butting in.
Just tell him dad I will handle my doctors and apt so you have to leave that part up to me but thank you so much for caring.
Parents are fixers, that's what they do, when you were little and fell down they would fix your scraped knee. so don't be to hard on dear old dad. Just appreciate the fact that he cares and wants to help. Maybe ask him dad I need help getting to my apt . do you think you could take me . maybe we could go for coffee after. I guarantee it will help the situation with your mom ask if she could help you change your bedding, She will be so happy to help you out.
I know how hard it is. As I said I am trying to get through to a 30year old and before that it went from 12 to 25 how do you explain pain. the only good thing was she broke her ankle and knew how much pain she was in I said times that by 100 and you know what I live with daily.
She's thirty now and still doesn't realize I can't go up and down the stairs thirty times to put out food at Christmas or for bday parties. I need help. Sure I may have ways I like things done but I do need help. I even close my eyes when she loads the dish washer , it's not my way but right now I can't bend over to do it so . I walk away and say thank you and pray the dishes come out clean. Tell them you belong to a support network of people who live with pain they will be interested and listen better. Before I got hurt I was a nurse I saw people with our illnesses come in to the hospital for pain control. Families would come visit but didn't have a clue what was happening. so be patient ,baby steps. gentle hugs casey

Thank you all for your words of wisdom. I'm going to try again with my parents after this procedure and my pain isn't as high. Hopefully I can have more patience then.

@casmac1 I'm 27 years old so that's why they're younger. I had a zipline accident when I was 25 and it gave me permanent nerve damage. My dad and stepmom live in San Diego and my mom lives in hawaii so having them come over isn't as easy. Any way, thank you for all the advice -hugs-

Eeyore22, sorry to hear about the lack of support from your parents. Like others mentioned, it's hard to get people to understand unless they have experienced the same situation or if they can physically see it. If someone is in denial, they will only change their mind if they really want to. It sounds like you have a good support system from your brother and cousin. The local hospital may have a support group that you can lean on when you need more support. At this point, it is important that you put yourself first to maintain your health. I'm sending positive thoughts your way.

This is hard nothing more annoying to me than when I’m having a bad day & my family or friends say why don’t you take your pain meds as if I didn’t. So here are some wise words from the great Jim Morrison
“People are afraid of themselves, of their own reality; their feelings most of all. People talk about how great love is, but that’s bullshit. Love hurts. Feelings are disturbing. People are taught that pain is evil and dangerous. How can they deal with love if they’re afraid to feel? Pain is meant to wake us up. People try to hide their pain. But they’re wrong. Pain is something to carry, like a radio. You feel your strength in the experience of pain. It’s all in how you carry it. That’s what matters. Pain is a feeling. Your feelings are a part of you. Your own reality. If you feel ashamed of them, and hide them, you’re letting society destroy your reality. You should stand up for your right to feel your pain.”
-Jim Morrison

I’ll send positive vibes for your family to gain the ability to hear you! As for now this group does

Hi, I am sorry to hear what you are going through. My dad also lacks empathy and has too much pride to apologize or try to understand my chronic pain issues. I have learned not to take it personally. I hope you can do the same. I know it hurts, but you need to forget about his involvement and move forward because you need to heal and get better and stronger. Best wishes to you!

Riley

Thank you @jarrey, @pain-less_pain, and @riley23 for you support! It's so nice to know that I'm not alone in this. I'm going to try and focus on myself and what I need.

Hi, I'm sorry to hear you're going through this too. Unfortunately I don't have any great advice because I've been through the same thing with practically every one in my life but I wanted to add, even though its hard, try not to take it personally. Like everyone said, unless you live with it, you've got no idea what cp is like, I know I didn't get it either. But this life can be exhausting and hard enough to waste precious energy on trying to convince others what its like. But good luck with your Dad, some people do eventually come around.

I wrote this today on my facebook page. I realize people don't see my pain so they can't understand what I go through daily. My goal was to relate my daily pain to some pains people had experienced.

I have fibromyalgia. What is fibromyalgia, well it's pain in your entire body every day. Fibromyalgia is not contagious nor will it kill you.

For those who do not have fibromyalgia you won't understand what a Fibro patient live with. So let me help you to understand.

IMAGINE THIS!!!

A 30 day headache....migraine.
A baby pushing on your cervix daily.
Typing for 24 hours straight.
The pain after your fist day of exercise
Someone putting steam all over your body from the iron
How you felt after pulling an all nighter then having a 8 am class
Getting a Charlie horse all over 2 or 3 times a day
The pain from standing in the cold for 4 hours wearing shorts
Someone touching your skin after being sun burned
Forgetting your train of thought regularly
Wanting to comb your hair but arms and hands won't allow it

The worse thing you can do to a person with fibromyalgia is judge them. We judge ourselves already.