Hi everyone

[Ryan]

I’ve been in a huge amount of back pain for 8 1/2 years, and I’ve been trying to find an online support group for a while, so I’m hoping this group is a good fit. I feel like I’m doing somewhat okay in the kinds of treatment I’m pursuing, but joined this group because I’m hoping to have someone I can just tell how I’m doing.

The thing is, I don’t have anyone in my life that I can easily talk with about how I’m doing and feel supported. My husband is crazy busy always working to support us both because I haven’t been able to work for more than 5 years, and he’s so tired of me being in pain that he doesn’t want to hear about it, so I mostly have to try to pretend I’m okay around him.

(My mom used to be able to listen supportively about how I’m doing, but she passed away last year, my dad passed away 13 years ago, my brother isn’t able to empathize in a helpful way, and my only friend is so busy I always feel like I’m burdening him if I tell him over and over how much pain I’m in.)

So, away, hoping some of you folks might be supportive. FYI, I don’t want to join any zoom meetings for now, because anytime I really acknowledge how I’m doing I sob uncontrollably (like when I type this for example), and I don’t feel like doing that in a live meeting.

Thanks,
Ryan

[TPC_YaYa]

Hi Ryan,

It is nice to meet you. We all need at least one person who we can be totally honest with when discussing our journey’s of pain.

I have been living with pain for 30 years so I get it. I also understand where you are coming from regarding Zoom meet-ups. It can be hard to stop the tears when we are talking about the pain and all that goes with it.

I would like to share with you a couple other options that may work for you.

The Pain Community has a hosted phone support group who meets every Tuesday evening at 7:00 PM. It is a great way to get and give support. Also it is totally okay if you get emotional on the calls, we have all been there and find ourselves sometimes just needing to cry and let it out with others who do understand. Here is the info for the support call and I do hope you will think about giving it a try. It is a small group who attends and there is never any pressure to share more than what you want too.

When: Every Tuesday: 7:00 pm ET

Call in number: 267-807-9601 Passcode: 491-268-096 and press the # key.

The TPC Outreach Support Conference calls are FREE, but please check your long distance calling plan to see if any standard long distance rates apply.

We also partner with a great support group on Facebook, it is a great place to meet and talk to others who really get what a life with pain is all about. It is called, “Friends In Pain” and it is a private group so once you join the only people who can see what you share are other members. Here is the link for you, https://www.facebook.com/groups/236329823140204
If you have any questions about the Friends In Pain group you can send an email to, friendsinpain@gmail.com

I do hope you will find the forums here helpful and the other options that I have shared. If you have any questions about these groups or if you would like to set up a one on one call, to ask questions about these support options, you can email me at, outreach@paincommunity.org.

Take Care,

TPC_YaYa
TPC Community Moderator

“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”

[pedwards]

Hi Ryan
Everything will be alright soon

[Ryan]

Thanks for the messages, YaYa and pedwards, I really appreciate it. I hope everyone is doing okay. I will try to join some of the Tuesday phone calls when I can.

I need to figure out a way to pretend when I’m around my husband that I’m okay, it is just too stressful for him if I’m honest about my pain levels. Does anyone else have experience with that? I wish I could just be myself, but that isn’t working. For example, today the pain levels felt like complete torture, and I just wanted to be able to acknowledge to him that it was really rough, but he got really upset about me mentioning it without phrasing it exactly the way he wanted me to (e.g., making it very clear that I felt optimistic about my overall progress, but was having a rough day). If I feel I have to tell someone about feeling awful, that’s exactly when I’m not able to remember the magic way I am supposed to phrase things…

The other side of things that’s really, really difficult is physical intimacy, to be honest. It’s tough for me to enjoy it due to my pain levels, but for him to be willing to try it I need to act like I’m completely fine, and come up with some kind of elaborate foreplay so he will forget how angry he is about years of not being able to be intimate very much. It’s far more than I’m usually able to muster, and I’m beyond exhausted about it. I wish it were feasible to go to couples counseling together, but that’s not an option, so it is completely up to me to figure out a way to get us out of this mess, when it is already taking superhuman efforts to just keep going day after day and try to juggle my creative work, taking care of the house, etc.

Anyway, I hope y’all are doing better than I am, sigh.
-Ryan

[TPC_YaYa]

Hi Ryan,

Living with pain and having a spouse or partner who gets over stressed when we talk about our pain is hard, it’s just plain hard, isn’t it?

We want to protect them however we also need to be able to express our true feelings.

May I ask why he wants you to express your pain in certain ways? I know for many spouses and partners they worry about us becoming too depressed or isolated. They want us to be optimistic however sometimes that is just plain hard to do when we are in the middle of a huge flare.

When one spouse or partner lives with pain it does affect the other one in so many ways. It is absolutely good to acknowledge that they are affected by the pain and how it has affected our lives together.
At the same time, they also need to acknowledge that the one who actually lives with the pain needs to be able to freely share the bad days as well as the good days.

I believe that sometimes they think they are truly helping us by trying to keep everything on the optimistic side however it isn’t helpful if it only helps them.

The stress that comes from a journey of pain is so abundant for all involved. Allowing all involved to admit it is stressful is helpful and normal and allows both to learn and understand how it affects each person.

I do understand you wanting to protect your husband and to take away some of the stress for him, that is what we do in a relationship, we protect those who we love.
However, what about you and your need to express exactly how you are feeling?

I hope that together we will be able to find you ways to help your husband and his stress of hearing you are having a bad day and also make it so you can express yourself more freely.

Physical intimacy in a relationship when one lives with pain and illness is hard. Once again it is just plain hard on both persons however the person who doesn’t live with the pain sometimes has a hard time understanding that the pain does affect it. It isn’t that the person who lives with pain doesn’t love the spouse or doesn’t want the intimacy, it is a constant battle with the pain.
I have spoken to my health care provider because sexual intimacy can be affected directly by pain levels or by the use of certain medications that are used to treat pain.

My best to you,
Take Care,

TPC_YaYa
TPC Community Moderator

“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”

[Author]

Posts