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Words do hurt

Nov 10, 2015 9:56 PM

Evening all.. I hope you all had a low pain dsy
My day was good. Not very eventful. I was thinking about my day and doing my gratitude journal and I thought back on a statement my family member said. And she actually says it a lot. Whenever she either does not want help or be around she alslways .." Well I have a job " and every time she says it its like a little knife is plunge in my heart.
This time last year I was a full-time hard working chef making my own money living my own life. But now I'm here supper dependant on my family. I know its probably just something I'm gonna have to deal with but I just wanted or needed to get this out. I wish I could get her to understand how such a simple statement hurt to the core. A state like that only compounds my feelings of inadequacy. I already feel like a burden on my family and that I'm not adding to there lives . so for her to say that often very often it just hurts..
So I'll ask you guys... Is there a statment that get to you ...

Nov 11, 2015 5:45 AM

Every time she says that, tell her, "Well, I am disabled." It's not a competition, and she isn't better then you. Perhaps you could also tell her that every time she says that you feel like she is telling you that she is better then you because she isn't disabled, and not only is that hurtful, it's kind of a terrible thing to say.

Nov 11, 2015 6:03 AM

When I was younger, a kid, my mother called me a hypochondriac. Even though I was born with a serious and rare medical condition that came with a host of surgeries and other medical issues, including pain. It still hurts, and I am very sensitive to anyone trying to say that to me, or trying to tell me I'm making it out to be worse then it is, or its in my head.

It hurts when ppl, especially doctors, don't listen to me.

It hurts and makes me furious when ignorant ppl imply I am an addict simply because I am on opioids.

When I worked at Aetna, I was struggling to keep my job despite my disability, I had a boss straight up tell me to my face that she didn't believe I even had any medical conditions. I was hurt and angry. I almost pulled down my pants to show her my battle scars.

It hurts me when during fights with my husband he throws my medical issues back in my face, when I have never done that to him. He'll throw these things in my face:

1. That I want him (or he has to) to go to all my appts with me. Neither is true. Previous to his getting a job, and after our only car died, his father lent us his car, but I wasn't allowed to drive it because I was on opioids. (His dad's words) So of course he had to take me to my appts. Now that he's working his dad takes me to all of them. The only appt I want my husband at is my pain mngt.

2. He has to get my prescriptions.
Again, the car issue. And he wasn't the only one to get our scripts. My mom picks mine up too. His dad picks his up. And before the car issue either he or both of us would go, because I have severe anxiety about going into stores alone. I especially have a hard time with grocery stores.

I'm sure there are other things, but that's all I can think off right now.

Nov 11, 2015 6:07 AM

Oh, right. I lost my best friend when I was 14 because her horrible mother told her that my medical issues weren't as bad as I said they were and the real reason I didn't sleep over at her house more often was because I didn't want to. That was a really bad time for me.

Nov 11, 2015 7:55 PM

"Well you don't look sick" or "you look just fine" is like scraping fingernails on a chalkboard. 🙏🌼

Nov 11, 2015 7:58 PM

That awful amie..I'm sorry for that

Nov 11, 2015 8:16 PM

I can relate to bring very dependant on my family. My life has completely changed over the past two years. And for me it is people who think they have it at least as bad as u but they can work a job and do whatever they want in their free time. I'm sure u know the type... The ones who ask how u r doing just so they can tell u that they are as sick or sicker than u.

Nov 11, 2015 9:13 PM

@amazingm yessss I know the type all to well.. I hate those types of people . I've found myself trying to just not associate with them or walk away from them..

Nov 11, 2015 10:20 PM

It's not any words, it's just that I have to practically beg for Doctor notes for work despite how high my pain rating is. It's like pulling teeth, despite the MRIs that prove my injuries.

Nov 12, 2015 1:14 AM

Through out my life words have hurt from my mom telling me she should have had an abortion, my first husband killing himself in front of me and the neighbor telling everyone in a small town in killed him to being sick my whole life and no one ever believed me. Of course there is a ton more but you get the idea.

Honestly they don't matter. What does matter is being your best support. Sometimes the old work smarter not harder. Is there any groups that could help you for certain things? Where I am there is a group called hopelink. I have a case manager who asks what I need then tells me about programs to help. Or researches stuff for me because she has access to better information. She just helped sign me up with a gas card program that reimburses me for mileage to and from Dr appt. If we didn't have a car it would be with free rides or a bus pass.

I encourage you to find whatever group is in your area. It gives you independence not being dependant. There is no shame in asking for help, the only shame is falling and not allowing someone to help you up.

Nov 12, 2015 3:04 AM

@ AmieLeBlanc - I feel exactly the same way. Reading your post. I felt like you were reading a page out if my personal journal. I've lost not just a job, but my entire career (I went to school for almost 12 college years). I've lost almost all of who I thought were friends. And my husband is constantly putting pressure on me to look for a doctor to treat when all the other doctors I've been to say there is nothing more that can be done right now. I think that may be what I least like to hear from a doctor - "we don't have any more answers, there is nothing more we can do". They don't refer on, they just kind of quit. I think they see us as "problematic patients" or high maintenance and they don't want to go out of their box to find more resources. That is really frustrating!

Also, while it's not something people say, I just get tired of people judging (you can see it in their eyes) and they have no clue. I'm just waiting for someone to say something so I can respond by showing them all my Frankenstein scars that are hidden by my clothes.

I admit, when I'm feeling worse, that's when what people say really bother me. On most days that I feel okay, i try to just let it roll off.

Nov 12, 2015 12:04 PM

"everyone's feet hurt" in response to me trying to avoid being on my congenitally deformed, manipulated and surgically corrected feet too long... I can feel the anger now.

Nov 12, 2015 7:54 PM

Proverbs 18:21 "Death and life lie in the power of the tongue; they that love it, shall eat the fruit thereof." 🙏

Words have immense power- and that power is often misused by those that are closest to us and should be our biggest champions and defenders. I'm sooooo grateful for our virtual "support group". Every positive thought, every prayer, every story, every victory, every tear, and even every emoji lets us know that we are not alone and that there is someone in our corner. People who understand and empathize.

Peace ✌ , Love 💚, Turtles 🐢 , and Frogs 🐸
Gentle Hugs 🙅, A few extra Spoons, and Prayers 🙏 for us all!

Nov 12, 2015 8:03 PM

Shiivahn..I love that.. Thank you . as well as thank you to everyone who responded or even read this post.

Nov 12, 2015 8:07 PM

Shiovahn, that was wonderful! You cheered my heart... Thank you! (((Hugs))) & blessings to you & yours! 🙏🌼

Nov 12, 2015 9:56 PM

"We'll, I get headaches too and you don't see me laying in bed because of them."

True,but your headaches also don't give you mini stroke symptoms, cause you not to be able to open one eye and inability to focus. When you get to the point of wanting to stab an ice pick into your temple just to relieve the pressure, THEN you can understand why I just want to be in bed.

Nov 12, 2015 10:11 PM

Karysma..I understand.. I actually loss sight while I have my headaches and cramps..I get " its just a little cramp..its all part of being a woman. ". And we not gonna even mention the bone pain... I want to say to them.. Well your cramps r not caused buy eggplant sized tumors pressing on your vital organs and nerves.. Some days I just want them to feel our pain just once for a little while and see how the talk then.

Nov 13, 2015 2:36 AM

Oh my god new, I hate that when people say that to me. I could be doubled over and People say, "it's just cramps, take some Advil".

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