I am known to give my honest opinion - and you have asked for advice - so I will try to be tactful. Take from this what you will.

From my understanding, for the month or so you have been in this long distance relationship, a week of that she has spent with her ex. But she was your friend for several months prior to that - or even longer. Speaking from the experience of what I feel was a long distance marriage (my ex-husband was/is a truck driver), no matter how many hours in the day you spend on the phone, carve out time, etc. there is a lot that is lost in translation when you are apart.

Answer this - with the best case scenario - with you going out to see her in a couple of months (your words) were you just going to continue the relationship like that until one of you could move closer? I guess it doesn't matter - just something to think about.

My other concern is - you remind me of how I used to be - getting so attached to someone so quickly - dropping everything to spend phone time with them, etc. - it seems like you are codependant. Does that ring true? It sounds like you are working with a therapist to deal with the issues your disease has brought about - have you covered issues of codependency and low self esteem?

Its easy to generalize - to say "all people see is im sick" - what else do you want them to see? What hobbies do you have? What are you involved in? Do you volunteer? What do you want others to see? Is it what you are portraying?

No - you aren't the only one left that feels that way - of course cheating is wrong.

I think you should lose yourself in things that interest you - whether it is advocating for others who share your disease, or going walking or whatever you enjoy - loose yourself in it. Get support from your friends and family that you were not able to spend time with due to talking to her. Get support from your therapist. Best of luck.

I was done reading after you said you met her here.

Here's what I have learned.

If you aren't here for advice, or to give advice, or to watch advice, then you shouldn't be here.

If you are here for a distraction, or to make friends or anything else, buyer beware.

Most here are in pain, or something is missing in their life, that said, they are vulnerable, more so than usual. From what I have seen, if you put two vulnerable people together, and they make incredibly stupid decisions, like trying to forge a relationship, when they aren't quite out of (physically or emotionally) the one they are trying to heal from. To me, it's just doomed to fail, as you are carrying triggers and many other things from your previous, into your new relationship.

All that said, my advice is as follows:

1. Never date anyone you met here.
2. Always follow rule number 1.
3. Don't stop trying. The first thing people tend to do after an ended relationship is clam up. This tends to put a dent in communication with potential future partners. For me personally, I don't have things I need to hide anymore. If I want to know something, I ask, and give my partner the same courtesy. If they want to know, ask, regardless of how hurt or whatever occurred in my last relationship, as this relationship isn't that one.

I couldn't agree more.

Thanks Ilove for your comments, and I'll do my best to answer. Today was pretty hectic and I haven't been able to be online.

The plan ideally was to go out for a couple weeks at a time, and see how that was. If all went well, continue doing that every few months, until such a time that I would be comfortable moving, or she was comfortable moving. In both scenarios, there were going to be challenges mainly because we are both disabled, with different things, so income is definitely an issue, but I more or less was hoping that when we got to that bridge, something would show up as a way to guide us.

Codependency isn't really something I've looked at truth be told. This girl and I knew each other for about 8-9 months before the relationship progressed, but I started having feelings about half way through that. According to her, she felt the same, and it took her ex lying to her to leave and give it a shot with me. After that, things were accelerated, which did scare me a bit, but also seemed a bit non-threatening due to the distance. Oddly enough though, that same ex that lied is now the one she is with again, so truthfully I'm at a loss as to whether it was my own stupid fault, or just the way things go.

I am not seeing a therapist, and haven't seen one since I was a kid. I find that I process things a bit different then most people, and I have trust issues that stem from therapists to begin with, so I'm not sure I'd be capable to let them in enough to alter the way I think. The low self esteem is of recent, as prior to her wanting a relationship, I had a really rough month with rejection.

I know that I'm a wonderful person, and that I'm worthy of a lot of things. I've found though, that when people find out I'm sick, whether by directly asking, like what do you do for work, or me placing it in my profile to be upfront, they run for the hills faster then a fat man after cake. It hurts me to know that I'm a great guy, and a wonderful listener, and could potentially be wonderful with someone, until they find out I'm disabled and run. Maybe it is just me, but that is a big blow to my self esteem, and is why I feel like everyone sees me as sick.

I personally try to hide it as best I can, and do what I can to not let it stop me from living my life. Are there modifications, sure. But it hasn't killed me yet, and I have no reason to just give in and let it win, like I did a year ago with my ex. Just last weekend I went Kayaking for the first time in my life, and it was an amazing experience. Did it screw me up, you bet. Would I do it again, you can count on it. No one gives me a chance to show them that side, before running, so it doesn't really matter how I portray myself, I'm already judged before I step out of the gate so to speak. I hope that helps you better understand.

As for you Msqtd, I normally agree with that. When I met this girl, I was in a very dark place emotionally, as my ex left me, and it was all crashing down on me. My illness, the fact that I am trapped for the foreseeable future at home with my parents, and I wasn't coping well with it. She came along, and we just talked, and she helped me get through all that.

You are definitely right though, that putting two vulnerable people together is a bad idea. I'm not as vulnerable as I used to be, but my illness is my big one, and one that will unlikely never go away. I'm here for coping mechanisms with dealing with it, and at the time, on this group based on my ex's decision and treatment of me.

I like your rules, and rule 3 definitely makes sense. I don't want to stop trying, I just don't see the benefit of it at the moment. I'm sure that feeling will pass at some point, I'm just hurt right now. It sucks being where I am in life, and I guess when you know most of it personally, and you can still betray me, it takes a chunk of me apart, to which needs to be rebuilt again.

I hope this answers or responds to all of your advice guys. I'm very grateful for your words of encouragement, and advice, and look forward to anything else you might add based on the response.

Ok not to sound insensitive but I just have to express that luckily this woman showed her "true colors" BEFORE you made that move because can you imagine how much worse off you would have been had you moved and your relationship became physical only to discover that she was cheating on you with her ex? Then you would have put all of your money, time and effort into something that was a lie from the start. Also you place alot of emhasis on your illness stating "everyone just sees you sick" "noone gives you a chance" You are generalizing when you say that....so maybe it's just the people you have chosen to pursue feel that way?

Good point. My daughter was diagnosed with Type 1 diabetes when she was 16, and it devastated her. I think she felt she couldn't attract someone who was a great person with a great personality who treated her well, so she settled for whatever came along and took an interest in her, and she now has the battle scars to show for it. With therapy she's learning that she's a beautiful person inside and out, and that she deserves the best of what's out there, and now she's not so willing to settle for less. Even though she's in the midst of another breakup, she seems to be taking this one a little better, and I think realizing that he really didn't deserve her. She has a whole lot going for her and a bright future when finished with college in a couple of years, and these guys she's dated have just kind of dragged her down, and as I point out today to her it's hard to meet the right kind of person if you are attached at the moment to the wrong kind of person. Each of these guys she's dated have been good people in their own ways, but kind of screwed up emotionally (she's attracted to that type because she's codependent - like her mother!! [me]), and she thinks she can fix them. She's now learning that she can't. Tough lesson. Took me 23 years to figure that out! Point is - if you value yourself, then others will too.

--"YOU seem to have a difficult time accepting your disability as part of who you are, and are worried because of that, that other people will do the same.. which is something else therapy might be able to help you work out. "--


Yah, Lisa that is a good point. I was thinking more along the lines of a support group for his specific illness, building on that, he could actually create his own group in meetup.com where people with the same illness could do things, and get together. Who better to meet than someone who understands your illness, as they are going through it as well. Huge common touch-point between humans yanno?

yep

:)

Long distance relationships have their challenges in general, let alone trying to have a long distance relationship with someone you have met on a support website.

I believe you can meet someone special almost anywhere, but when you are active on a support website, you have to be midnful that they came to that support website for a reason. That they are still there because they need support. That just because you started a close relationship with this person, that all problems that brought either one of you to the support website just don't exist anymore.

That is not realistic thinking.

Again, I believe you can meet someone special anywhere, including this website. I have seen many success stories despite those that weren't. But when meeting somewhere that you both came to for support, you have to be real about the situation, environment and mindset you both are in. That you two were working together to support each other and that things are not resolved on either end just because of the closeness you two have felt and/or shared. That just doesn't miraculously work itself out oevrnight cus of this new found "friendship". Its about keeping it real, knowing the consequences, communicating the needs and being mature enough to know when not to take that step forward because niether of you have yet walked away from the past. It about working through the bad times and being supportive and understanding in order to enjoy the good times that two people can share in the end.

Stay true to you and real to others...

Thanks ChiTownBear. Your words are definitely inspiring to me, and it is something I fully agree with. The reasons we are here are different, but I do fully see your point, and you are right. I don't want to say that I completely turned a blind eye to how we met and the reasons for that, but I will say I did try not to think about the reasons we were here, and hoped that they were resolved. It started as friends, and I had no intentions of it going farther. I think from now on I will be a bit more careful with those types of decisions.

Quoting this as a point of discussion -
""YOU seem to have a difficult time accepting your disability as part of who you are, and are worried because of that, that other people will do the same.. which is something else therapy might be able to help you work out. ""

I personally do not have a difficult time accepting my disability. I know full well that it is a part of me, whether I want it to be or not. A year ago, yes, coping with it alone for the first time in ten years was very hard. During the separation, I had to learn how to manage myself, and believe me when I say that was a challenge I doubt I'll ever forget.

I am not really worried about what other people think. If they don't like be because of my disability, it is their loss, not mine. Just because I have an auto-immune disorder, doesn't make me any less of a person, or any less valuable of a person. I find that my problem, and this is just what I've experienced personally over the last 5 or so months prior to this relationship, that when I meet someone new, that it hasn't went well.

Case and point, you talk to someone for a few days. You hit it off, same types of interests, desires, wants and dreams, so on and so forth. She seems to like you, and you seem to like her, and all is well, until the dreaded question, what do you do for work comes up. My response, because I'm an honest man, is that I don't work, I'm on disability for an illness. That is all that needs to be said, because after that bell is rung, they leave, never to return to talking to you.

This has happened a total of 11 times, so while you might feel that I'm a bit obsessed with my illness, truth is I dread it with a passion for this reason. This is my single point of failure, because for whatever reason, being disabled, or not working, isn't desirable, and apparently is a big enough of a red flag to terminate conversation almost immediately. I don't know any better way to convey this.

My life, while I have to manage and be careful, doesn't revolve around my MG, not anymore. I go out, and do things, on my good days, and even on my bad days, I relax and watch tv, or play games, and just enjoy the day, regardless of how I feel. I don't make it known that I'm struggling unless it is asked, and I don't go out of my way of telling anyone about my illness, unless it is needed.

Since most of the comments past my last one revolved around this, I wanted to clear the air a bit on it, and maybe make it a bit clearer. My MG, or the fact that I have it isn't really my issue. It is the social stigma that comes along with being sick, for whatever illness, that I've run into, and have no idea how to combat it without lies and deceit, which is something I won't do. I'd rather be lonely then lie to someone.

In regards to to making a group, that is why I'm here. There is quite a few people here who struggle with MG, and when I'm having a bad morale day with it, I do come here and talk and it makes me feel a lot stronger emotionally. My disease is rare, and I know no one but here that has it. I have my support systems in place already, to manage and cope with it on my own. As I said previously, if it wasn't the single point of failure in any conversation with a new person seeking a date, I doubt I'd even be here talking about it.

So I would first like to say that if I've come off as a bit hostile or upset, I'm not, and I apologize for that. Words can only convey so much without tone and inflection. More over, you guys have really made me think about how others are perceiving me, and that in of itself is a gift. I do thank you, for your input and consideration in helping me with this. I do indeed struggle sometimes, and it is nice to come here and feel so comforted.

Hi Tesinato: I'm disabled and in an electric scooter. It wasn't my goal as a kid to end up in a scooter as an adult, but life happens. I've had back surgery, I have L-1 in my back that broke and never healed from a fall, I've got chronic serious migraines and used to get injections in my head and now get Botox in my scalp and the back of my head, neck and shoulders. I also have carpel tunnel and nerve damage in my hands which is getting bad. For years the doctors have fought over whether I have systemic lupus, although they have seen the malar lupus on my face at times (that butterfly rash pattern on the face). I also have PTSD with flashbacks.

I am SO HAPPY to have the electric scooter because it allows me to get to the back of stores and I couldn't walk that far with a walker to get there before. It's fantastic and I'm so fortunate for that. My scooter is my legs and takes me places I need to go AND IT'S GREAT!!!

I go out in stores and I make sure my hair is done nicely, my clothes look nice and I have a smile on my face--because I'm GENUINELY HAPPY to be out and not have to struggle to walk like I used to. People smile at me and talk to me, and tell me hello and I don't know them, but I apparently look friendly and they feel safe and okay and want to talk to me. I realize that life could have been so much worse for me and I was blessed that it wasn't.

When I fell and broke the L-1 in my back, I was in the hospital for a week. The first three days I was paralyzed from just under the chest all the way down. Now THAT was a real worry. I wasn't worried about other people or what they thought, but instead about getting the training that paralyzed people needed to transfer to a bed or a sofa and all of that and my head was spinning with ways to be able to get the training to function the way I wanted to and that was full tilt. I was so fortunate that the paralysis was temporary and only for 3 days. HAPPY FACE.

People with disabilities can get stuck in their disabilities, instead of focusing on what THEY CAN DO AND THE POSITIVES. In fact, it's usually them that have the stigma, and not those around them.

When you meet people, don't tell them you are on disability. It's none of their business. You're not working right now and that's all they need to know. Someone who knows you for 3 to 4 days doesn't get the right to know your life history, so don't put it out there. I don't. 3 to 4 days isn't any type of serious relationship so start to realize you really don't know the people here and don't owe the "truth" and every detail of your private life in private messages.

I'm sorry if this seems rough, but if you have a pity party for yourself, you'll remain in a pity party. Your disability isn't cause for a pity party and you want to rise up and find the positives in your life. Sit down and write a list of all the positives in your life and put them in post-it notes on your mirror if you need to so you remember them every day and are grateful for them.

you spend many words defending yourself and few words going more in to what you can do now.

I have learned over... and over ... and over again ... that people are going to think and/or make assumptions upon others based on what is at eye sight versus what could be really going on. That no matter who you may be, what you may stand for, what you know yourself you are dealing with and going through, there will be someone there to challenge it based on their own opinions/observations and mostly perceptions. Which is all their own, not for you to own.

You can spend a great deal of energy and time defending yourself, or you can put what others think back on their beliefs and move forward with your own knowing exactly who you are and why you do what you do. You can't control what others think, you can only control your own thoughts and actions. So make sure to always stand by your own and quit engaging with those who may continue to bring you to their level, not you bringing them to theirs. Just realize, you may never bring them there and in the end, what value will it really hold in your life? In no time at all, you probably won't be interacting with them. Give yourself your energy, time and importance and let others be with theirs.

"you bringing them to theirs"

should be

"you bringing them to yours"

Just a thought: maybe instead of saying you're on disability, just say that you aren't currently working due to an illness. You don't have to elaborate on the illness, and you don't have to say where you get your income from. Both of those are nobody's business so soon after meeting them. It lets them know you have an illness, and that you aren't currently working, but it doesn't say how sick you are or that you are living on a limited income. Then they can get on with the job of getting to know you better. Sadly, some people have an image in their head of someone on disability lazing around the house all day and getting the government to pay their way the rest of their lives while they take it easy. Obviously this is not true for so many people. But there's no need to go into detail about where your income comes from or how sick you are. Let them get to know you and see for themselves and you function just fine.

I'll have to give that a shot. I tend to be pretty open and honest, and I think you guys are right, there is no need for that at first. I'm still learning all the social protocols for this, and it is most likely I'm doing it a bit wrong, but that's ok. Learning experience and thankfully I have wonderful people like you who have this awesome ability to help me out.

Chitownbear, I always feel like i have to defend myself. Even in my personal life, I feel I have to make excuses to the people who are closest to me about my illness. My family, doesn't seem to understand, so when I knock something over, or spasm, or am just having a weak day and can barely move, they act like I'm making a big deal about being sick. So sometimes I tend to get a bit defensive about it, with them, and my friends, because of the way they treat me about it.

ATGB, It sucks that I deal with it, but I find that it is my life, and will always be a part of my life. I guess I feel I'm always on the defensive side. To your point about focusing on what you can do, I do very much. I try hard not to let it get me down, and think about what I'm capable of doing. I don't always win, but I do what I can.

I'm glad to hear that you are so positive even with your adversity. You seem to have been through a lot, and I applaud you on your bravery and courage through it all. I don't know if put in the same spot, I would be nearly as brave. It took me years to cope and get a grip on having MG, and even today, there are days I struggle. Maybe you are right, that it is me who has the stigma. Maybe it is how I'm going about letting them know that is the real problem, not that I have it.

You guys have given me a bit to think about, which I'm happy about. I haven't been around the last couple days due to going out of town with my mom, which is another can of worms, for another topic. But now that I'm back, I'm glad to see your posts. More analyzing and processing to be done, but for tonight, sleep. :)