Lonely with the condition

[Fibonacci]

Do you get lonely with Fibromyalgia? my friend who has it, I try and visit him atleast 3 times a week but he rarely leaves the house I noticed. He tells me he doesn't feel the need to leave the house because his condition just makes him depressed, and the result I think is that he is lonely. I know he tries meditation to cope, with good results. Does having Fibro make you lonely now and then? how do you deal with it?

 

[1sweed]

That is a good question. It is not so much that fibro makes a person lonely, I would say due to our condition we often stay home more than we should and so while life moves forward for everyone else, our lives can often grind to a halt. When we hurt too much somedays to get out and do things with friends, then friends often stop calling or asking you to go along. Soon people forget to call at all and if we don't get smart and do more outside our homes, we are forgotten.
I do get lonely, not just because of fibro, but because I have always been a bit of a loner. People can change and maybe your friend would go out more if he was asked to go along with others. It makes for a lonely life if you never come out of your home.

 

[foggyhead]

I have ME/CFS rather than fibro, but I think any chronic condition can cause you to lead a pretty lonely exsistence. I've had a lot of bad reactions from people in the past regarding my illness which puts me off getting too close to most people. The fact you can't physically leave the house so often certainly has an effect, but one of the biggest things (for me at least) is that when you feel like rubbish and are completely exhausted, you lose interest in the outside world and lack the energy to really listen to people/make conversation etc. I don't mean that to sound mean or anything, I don't stop caring about people, I just literally do not have the energy.

Most people wouldn't want to go out with their friends when they have the flu, and you feel the same with a chronic illness, the problem is that it doesn't go away! To a certain extent you try and learn to adapt, but there's only so much you can do. I hope your friend does feel well enough to get out soon, and you are a lovely friend for going to visit him so often. I have lost the vast majority of my friends through being ill, they soon forget about you once you don't fit into their world anymore, and I'm sure he really appreciates seeing you.

 

[Ohyesuare]

My mom is similar, she doesn't really leave the house much and goes through bouts of depression. She has become a member of a support group and I think that helps with the loneliness plus she gets to meet with other people that have the same condition. I think she is a part of some online groups as well that she also Skypes with occasionally. Maybe your friend can try doing something like that if you want to make a suggestion to him.

 

[SulaBlue]

I hear you!

I can no longer drive. I didn't leave my house much at all last year and got very depressed. I got so little sun that my doctor put me on high-dose vitamin D! I've started using my city's paratransit service since I can't get to the regular bus station but man... it is the *CRAZYMAKING*. Arriving at doctor's appointments an hour and a half early, service running up to 20 minutes late after you already had to wait 30 minutes after your appointment, etc. It's enough to make me want to go back to not leaving the house.

 

[NorthernHarrier]

Yes, fibro, CFS, myofacial pain, etc, are very isolating for many of us. I have symptoms that are debilitating, and leave me very tired, as well. In addition, it takes all the energy I have just to get through the work week, and then some.

 

[birdwatcher]

I am new to this site and very happy to have found it. Especially this conversation since I'm a hermit. My story is very long and complicated as is with all of you I'm sure. Needless to say I have never been a social person but since diagnosed with FM over 13 years ago I have grown tired of the constant judgement of others. When I finally won my SSD I had hoped people would see my illness as real. But no they just labeled me a freeloader on SSD. A couple of people were actually angry with me because they had applied for SSD and were denied. Now how twisted is it to be angry with me?. Most people only see me on "good" days and never bother to look behind the scenes at the "off" days or weeks. At one point, in the beginning, I actually tried to explain what I live with. Yep you can guess what a huge mistake that was. No one in their right mind wants to listen to all the symptoms of FM I can't blame them. Even my family treated me like I was being lazy, feeling sorry for myself, over reacting. These days if anyone ask I only respond with "I'm great". I'm not only a hermit if anyone calls or ask they never know how I'm really feeling.

Yes it is all very depressing. On the good days I'm able to get up and go about my day gardening, reading or what else my body allows me to do. On bad days, like this, I enjoy watching reruns, if you can call it enjoyment. This is the only "real" contact I have with people. By real I mean I can be real with out feeling judged and rejected. Even though I wouldn't wish this life on my worst enemy I hate to admit I find hope in finding others living this nightmare.

 

[mariposa]

My mom is similar, she doesn't really leave the house much and goes through bouts of depression. She has become a member of a support group and I think that helps with the loneliness plus she gets to meet with other people that have the same condition. I think she is a part of some online groups as well that she also Skypes with occasionally. Maybe your friend can try doing something like that if you want to make a suggestion to him.

I think this is a very good idea... if there's not a local support group or if it's impossible or difficult to get out for whatever reason, online support groups can be just as helpful. Often the people get to know each other as well as if it would be "in person" and go on to exchange phone numbers, etc.

I'm sure it makes a huge difference to hear another voice on the other end of the phone line who *does* know what you're going through and doesn't just "say the words" that they know how you feel.

 

[mariposa]

No one in their right mind wants to listen to all the symptoms of FM I can't blame them. Even my family treated me like I was being lazy, feeling sorry for myself, over reacting. These days if anyone ask I only respond with "I'm great". I'm not only a hermit if anyone calls or ask they never know how I'm really feeling.

Yes it is all very depressing. On the good days I'm able to get up and go about my day gardening, reading or what else my body allows me to do. On bad days, like this, I enjoy watching reruns, if you can call it enjoyment. This is the only "real" contact I have with people. By real I mean I can be real with out feeling judged and rejected. Even though I wouldn't wish this life on my worst enemy I hate to admit I find hope in finding others living this nightmare.

Very nice post, birdwatcher, and I suspect you'll be surprised at just how many people share your feelings about this whole thing. I've been to that point (not with fibro, but generalized illnesses whether big or small) where I determined it's just easier to say "I'm great, how 'bout you?" because you can never be quite sure if they're interested or using politeness when asking how you're feeling. :roll:

Yes, it's always a comfort to find others who are going through the same things and remind us that we're never alone, no matter what the issue is.

 

[kmpisces]

I think it is hard for some people to want to go out when they have FMS. You can feel so poorly and a lot of people do not understand the condition. Sometimes going out actually makes me feel better. But other times, it makes me feel worse. I do agree that it helps to be able to connect with others who have FMS. It can make you feel less alone in what you have to deal with each day health wise.

 

[Amalia]

I think that you are very kind and caring person and your friend is lucky to have you. If He doesn't want to get out the house, then just stay and chat or do some other activities that might relax him for a while. Bring up the going out part from time to time, I am sure he will eventually say yes. Don't push him, but try to 'lure' him out by suggesting activities he likes or liked doing. I am sure he gets lonely sometimes and a phone call once in a while, when you can't visit, could be very welcomed.

 

[1sweed]

Yes, birdwatch is right about people who get angry just because you applied and got disability, and they applied and did not get it. Someone I know was mad at me because I who was in FL at that time got my SSD, and her sister in PA., applied and was turned down even thou she was very ill. The only part that she fails to grasp is it took me seven years total to get my SSD. Having it helps some but my income is so small that it is a hardship as well. I wish things were not so hard for other people to understand or too have compassion for others who suffer. It always seems these days most of the non-understanding people are only interested in their feelings and themselves, and have no thought for anyone else.

 

[crystal_ryder]

I have always been a very out-going person, until I started with the Fibro symptoms. I now have become a hermit and even am terrified my fiance' is going to leave me because of it. I keep thinking that he fell in love with a healthy, vibrant, and adventurous woman and now I have to fight just to get out of bed everyday. I am depressed and only leave my house once a week to get my food. I lost my job due to too many missed days as well. Being that I didn't have a diagnosis till this week I could not file for the Family Leave Act, so my job was not secure. I still don't see a light at the end of my tunnel, because I have more bad days than good and would love to have some advice to help me cope.

 

[mariposa]

I now have become a hermit and even am terrified my fiance' is going to leave me because of it. I keep thinking that he fell in love with a healthy, vibrant, and adventurous woman and now I have to fight just to get out of bed everyday. I am depressed and only leave my house once a week to get my food. I lost my job due to too many missed days as well. Being that I didn't have a diagnosis till this week I could not file for the Family Leave Act, so my job was not secure. I still don't see a light at the end of my tunnel, because I have more bad days than good and would love to have some advice to help me cope.

All I can say... and I know it sounds cliche but ... well words just don't help... is that continuing to look for that light is very important. Keep reading about new treatments, homeopathic approaches, etc. and you may just hit something that works for you.

When it comes to your fiance, my first thought was that I'm rather sure I wouldn't want to spend the rest of my life with someone who runs out on me the minute the going gets tough anyhow. I hope he'll be the man you need and not let your diagnosis change anything about your relationship.

 

[birdwatcher]

crystal_ryder wish there was something I could say to make your life easier. I also live as a hermit so I know all to well how you feel. I simply do not feel comfortable around people. I am so humiliated by the fibro fog I just can't bear going through it over and over again. The majority of the time I'm painfully aware that I have absolutely nothing in come with others. I have tried in the past to be friendly with some of the secretaries at my husbands office. Recently I was reminded why I prefer being a hermit. One of the girls who has always been "friendly" with my husband told me he could tend her garden any day. Luckily I have a wonderful husband who is very reassuring and loving. After 35 years of marriage he is used to me being insecure. I have to admit, just like you, I wonder why he ever fell in love with me in the first place. After living with FM for over ten years I question why he has stayed with me. There are so many bad things that FM has brought into my life but one good thing is I am so very appreciative of his love I thank him every time he tells me he loves me. Believe it or not life does get better even with FM. As we all know we have to be thankful for the good days and hang on through the bad ones. I will say that being a hermit I have searched for online support for years and this site is the best I've found. Thanks to everyone here for making my life better.