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The pain of loneliness

Aug 06, 2015 12:05 AM

So I've been living in constant pain for 5 years now. Most days I can accept that and try to make memories despite it, however there is a type of pain that I can't seem to get over. I just feel so alone. I'm married to the greatest man alive who tries to rub and rub away my pain but it's evident when he keeps asking "what's wrong" on a flare day or when I get over stimulated while out shopping with pain and too much information and can no longer communicate properly and he keeps asking me questions that I know he doesn't get it. To no fault of his own, no one gets it unless you experience this. I can't work, and it takes everything out of me just to cook dinner and get out of bed. I've had 8 surgeries in the past 6 years due to crappy knees and a gallbladder attack. I'm only 26. Most people my age are just too fast for me to catch up with. So the friends who didn't get scared away from all the medical talk, I push away. Because I just can't relate, can't connect to party stories, or going shopping or whatever they normally want to do. So when I try to bring them into my world, they get quiet, which I don't blame them. I mean who knows what to say about spinal injections or another round of physical therapy? But still, I just don't feel like anyone needs me. No one can relate to me, and sometimes I just don't feel like I have an anchor in this world and the pain will just swallow me. I don't think I have depression, and most days I'm very positive and I put on a happy face but there are times when the sadness just creeps in. I just need someone to see me. See how much pain I'm in and give me a hug and just tell me it will be ok. This is way more than any 26 year old should have to handle and no one gets that. Maybe I'm too good at hiding it, but I just wish people could see how much I struggle just to keep up. I'm a member of an online support group, but it doesn't replace a warm hug and a smile. Any advice on how to cope with the loss of friends? Thanks all. This is my first post and this has been on my chest for a while. Feels good to lay it down.

Aug 06, 2015 12:20 AM

Loneliness is really hard. I'm 14 so I can understand not being able to keep up with friends. Currently, I only have one friend without medical issues, out of three. I'm willing to talk to her, and we're both so ADD that we never stay on the same topic anyway so it almost doesn't matter.
I have one friend with digestive issues so far undiagnosed, and another friend with many surgeries and Lupus. I've never really been able to relate to normal people. My sister says that I distance myself from them, and I kind of do.
If I were around, I'd give you a hug. My only advice would be to try and find family, or a face to face support group. Online groups help a lot, but hugs can really help when everything feels like it sucks.

Aug 06, 2015 12:30 AM

Thank you. I may try to find a face to face support group. I joined one when I was first diagnosed with Fibro, but they were all double my age and throwing around terms I didn't understand yet and it overwhelmed me. Thanks for the advice and the virtual hug!

Aug 06, 2015 9:10 AM

Samantha89, I'm so sorry you're dealing with so much at your age. I had a few issues in my 20's but most of my health issues started around 30-33. I was still able to work until 2010, and what was supposed to be simple removal of a mass turned into 5 surgeries with many more problems since. I'm about to turn 54 and I feel 64+. Every attempt to help one problem has either been temporary or lead to other problems. But through my faith in able to get through. And finding this community has really helped!

I am under a psych doc because chronic pain contributes to depression and vice versa. Just last year i began thinking "dying would be easier on everyone." Of course it turned out the Cymbalta was causing worse depressions so I'm off it and on Nortriptyline. From your comments I believe you may be having depression, and you should let your PCP know. It's a normal symptoms for all of us, but left unaddressed it can actually get much worse. A support group would be good. Even if the others are older, if you don't understand what's said they would likely help you by discussing it morhim, but not just him. Be open with everyone. Years ago I did a depression support group and we varied in everything, but it turned out to be great help. I worked in the medical field and the words can be difficult for many. But with my dementia & fibro fog I have to look up stuff more. I'm unable to comprehend reading until I've read it multiple times.

And even though your husband can't really understand, be open and talk with him. Explain to him what your body feels like before, during and after a shopping trip. If you haven't already, read "the spoon theory.". It will help know how to express things to others. My hubby of 34 years finally understood what I go through when I started taking him to appts, and he'd ask questions or make comments. Some docs out him in place about my inability to control pain or symptoms. My rheumy doc is the best at helping him understand and become supportive. He's now my best advocate!

Look up www.living-smater-with-fibromyalgia.com & www.butyoudontlooksick.com & www.fmnetnews.com. These are good info sites and the spoon theory is on the second link site. Though it's just virtual I'm sending (((hugs))) & I'll be praying for you. You don't have to go through all this alone. We're all here for each other. 🙏🌼

Aug 07, 2015 12:57 AM

Samantha,

Like I mentioned in your other post we have a lot of similarities, just 10 years age difference. I feel the exact SAME way about being alone.
Until April I was working about 32 hours a week at my local library as the children's librarian for 20 hours and then filling in at any other of 26 county libraries as needed, which is pretty fun because I get to meet a lot of people both staff and public. I have done this for over 11 years until HR decided I can't work anymore and told me to clean out my desk and go home pending a decision about disibility retirement. Just got the official letter yesterday saying I don't qualify for disibility retirement because I don't have the service credits so they just left a vague so now what? Lingering at the end of the letter. Short of it, I'm cut of from everyone at work due to legal things so I feel very isolated from that, plus feel a lot of coworkers just don't care because they've seen how poorly I've been treated for years and have said and done nothing except a select few.
I feel as if I have no friends at all because I spent all my time working or sleeping and just trying to stay alive. My so called best friend left me for another woman who she could go drinking with and who also has kids and they can go to concerts, baseball games, bars, amusement parks and don't have to worry about ADA access or if I need a wheelchair for the day.
It broke my heart when she stopped calling and texting ND all her Facebook BFF posts were suddenly about someone new. What's worse is she would post stuff hinting about people in her life playing the victim, or being lazy, or asking/begging for help when everyone else works hard. I have a Gofundme account for emergency situations like hospitalization causing eviction etc...
It's still so painful, I'm crying while writing this. Then yesterday, out of the blue she posted on my wall an invisible illness support quote. I have no idea how to process that, or what to think.
Sorry, that was a tangent. I feel isolated too. I feel I have the two people I live with my cousin who is like a little sister to me and has helped take on part of a caretaker role since moving in so my boyfriend can have some off time, and then of course my boyfriend who is basically my angel and does his best to take care of anything I need and wants to understand as much as possible to the point that he attended chronic pain classes with me as well as most Dr.s appointments and is truly interested in articles on my conditions as well as looking at the gory and squishy stuff like photos of my endometriosis surgery. It's been amazing after being married to a man who would dump me out at the ER curb and go get drunk or high with friends.
I think places like this online Forum are very important for us to be able to connect and share our stories. I would have never known there was someone 10 years younger going through some of the same feelings and situations I'm facing if not for this app. It really does help to know. And I don't know about you, but I'm always open to talk, whether about loneliness and isolation or the challenges/fears of becoming a parent. And if you're ever in the SF Bay area I'd happily give you a real life gentle (((hug))) to go with this digital one.

Aug 07, 2015 1:04 PM

Samatha85 I am so sorry that you are feeling like this while dealing with constant pain at your age. I hate it when I read from a child or young adult dealing with this monster we call chronic pain. My heart goes out to y'all and I can say I understand how y'all feel, it seems like sometimes we are alone and no one unrest ands where we are coming from. I' m sending warm thoughts and hugs to y'all.

Aug 12, 2015 2:17 AM

Samantha,

I am sorry that you are suffering from loneliness. That you are in need of comfort when experiencing your afflictions and it is not there. It sounds like you have a kind husband though but he is unsure on what you need. I am going to take a stab at something and you can tell me if I am way off base. I am sorry if I am as I don't like to offend anyone. That is my ultimate goal, not to offend anyone.

All of us want empathy. We want people to have a basic understanding of what it is like to be us even if they don't have what we have. We have heard it said that they can't really know what it ist like to be us unless they have been in our shoes. But that is not necessarily true, is it? We have collected a lot of human data of all of our years to be able to put together enough imformation to understand what it is like to know how a person feels. It all takes imagination. That is what empathy all falls down to. You don't need to climb on a ladder to know what looking down a ladder looks like. Because if you looked out your window, you got the same perspective. Same with pain, we can describe pain that we have, people just have to understand we have more of it, with longer periods, and more intensity, and imagine it. Most everyone has a pretty good imagination.

What I am getting at and to get to the point is your husband is asking you how you feel? What is wrong? That is a good sign. He is concerned. At least, it sounds like he is. It sounds like you are trying to shield people from your problems. I don't think you should be the downer of the party with all your medical party but if someone ask you, I would answer them. When someone ask me how are you? I dont lie, I say, I am here or I am o.k. I am not going to say I am great to make everyone feel happy. But I am not going to make the conversation about me. I don't want that. When our friends ask us how are we, we need to tell them the truth. Don't shield them. If we want empathy or a hug. They have to know something is wrong first. They can't read our minds. That is not meant to be harsh. They just can't. It would be so easy if we didn't have to tell them. It would great if they could see it in our face but if you are like me, we were taught to hide it in our faces to. You know, put on a brave face. We have all heard it. We all have been taught to hide our pain, physically and mentally. So we need to do the opposite but without extreme. We need to share with a select group of friends. People we care about. People who care about us. People we know who are wise enough to use their imagination and can use their god given human data to interpret how we suffer from day to day. Then they will give you that hug you want. But it all starts with you talking to them about what is going on in your life, telling them really how your day is going, telling them really how you are feeling, telling them really what you can and cannot do.

That is enough from me. Again, I hope I didn't offend. My best wishes to you. I had to use my own advice. It has helped me. I also had to find me a friend who was not well all the time and dealt with pain and need someone to talk to. You can find them at the doctor's office or pain clinic. I just had a friend in that position. I think we all have one. Best wishes

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