When i first got diagnosed i could go to school every once in a while. And i had friends. Now, they don't even talk to me. Did this happen to anyone else? I feel so alone, especially being a teenager. Any help or advice would be appreciated. I tried talking to them but it's just like "Heyy" "hi" "whats up" "nm u" "nm" and then done. Is anybody out there? :/
-Naomi
that happened to me sort of, my friends did not understand but I helped them to. We are also in our late twenties and thirties now so it may be different with how they respond and your friends respond. I was diagnosed 8 yrs ago so then my then BFF did not deal with it very well and ultimately it ended our 15yr friendship. All I can say is try to educate them but you must think that at this age they aren't really trying to learn about it, maybe ya know. not all of them are this way but some may be and it's nothing you can really do about it. I am not trying to get to you to think that all of your friends will end up being turning you away but I want to you to take in the possibility that it can happen and to be prepared for it and know that it's not you or them, it's just hard to adjust to any kind of change for many ppl.
I believe they WILL come around. . if it's new to you then it is new to them. If you have to adjust to it then so do they. Give them a chance to open up to the idea of having something like this to adjust to within a friendship.
Even though my friends are all over thirty it took them a little while to understand and now that they do we have good days and bad days of friendship but they are aware of what this can do to me and how it can make me be so when I spaz out on them they know it's not ME doing it but what's happening to me. . .
Good Luck!
And You are never alone
So sorry to hear that you feel alone. With my fibro I can be surrounded by family at a function and still feel alone, but just know that you are not. Most teenagers aren't mature enough to deal with a sick friend beyond a cold or broken bone but there may just be one out there. And talking to people about it is a hard thing to do cause most adults don't even understand, that's why I'm glad you have found this site. I'm not really sure what to tell you except that you are not alone even though you may feel like it. Try to make the most of your good days and a positive attitude can defanatly go a long way.
Hi Na!
This has to be hard on you, friends are everything in HS, but they may not know how to be good friends, and that is not just a 'head problem' of the young!
The good thing is that summer is here, your break from school is almost here and you have the chance to make some friends outside of your school hopefully. There is the park, the pool, the mall, so many places to make new friends who will hopefully be more caring and less 'self absorbed'. Chances are that there may even be some girls around your school or neighborhood that are not this way, those will be the ones more likely to be your friends for life, and good ones.
I know it hurts, but move on, better things ahead!
SK
That happened to me. I learned that people are usually uncomfortable when they see you for the first time after you get sick. They seem nervous partially because they don’t want to say the wrong thing and be disrespectful. You can almost think of yourself as radioactive.
So what I did was decide who I want back in my life and I see those people as my friends. The ones who didn’t speak to me for the time I was in hospital,etc I do not initiate contact with.
To be honest a great deal of my recovery process has been shedding my past and developing Ito the new fibro me!
Yep... it happened to me. I am 21 now but have gone the last two years with just the basic communication with people I used to be friends with. I am too sore and too tired to go out and socialise on a regular basis and my partner works away for 6-8 weeks at a time so a lot of the time I even lose that contact.
My partner thinks I am just awkward for not going out and meeting new people but I am honestly too sore to go. I know it feels bad now but you are not alone when there are people who sympathise and understand what you are going through. If you want to contact me then feel free and I will see if I can help at all. Mikex
Hi Mike,
So sorry you are suffering so much at such a young age, I am astonished at how many young people are fighting this, I hope that somehow your partner can come to an understanding about how FMS affects you and your life. Perhaps they could go along to the Doctor with you and acquire a better hold on it, or you could start printing out brief info about Fibro and leave it around the house where they would see it and pick it up.
Hope things take a better turn for you and you can get out in the world to be young and have fun!
SK
I have tried getting him to come along with me and see a doctor and in his credit he does try his best to help... just sometimes he is not able to. Another problem is my fibro is complicated by other things and it means we are not sure what is down to what. Mikex
I understand, Mike, Fibro never seems to come alone, sometimes it leads to a more precise diagnosis, then it seems sometimes it doesn't. It is so frustrating, so difficult to explain and so unpredictable, and then throw a few more in and it can be quite a challenge!
We all handle it in our own ways, depending on the day and the situation. Personally, I am a researcher, I want to know everything I can, I need to understand, and sometimes that is not possible. It is not always logical, and no two Physicians define it in the same terms, some do not even recognize it at all, some believe it is only the beginning of a further diagnosis.
From what I have been able to gather I would say the things that I believe trigger it are firstly trauma, either physical and/or emotional, secondly underlying allergies, mostly to food, possibly chemicals, and then underlying, undetectable infection, bacteria.
Is that too much info for you?
SK
Hi, how are you doing Na?
Just checking in to say hello, talking to Mike right now...
SK
Not to much info no :) I am the same. I need to understand it as much as I can so I can rationalise it. I have had a lot of broken bones which I guess could count as trauma, and am allergic to latex and I have noticed that in the weeks after coming into contact with it the fibro gets a lot worse. Mikex
OMG!!!! THAT SOUNDS LIKE ME TO! except i was just now diagnosed 2 yrs after i graduated but i was on H/H (Hospital/ Homebound) fully my Sophomore and Junior year because my pain was so bad..and then my senior year i went to school only when i felt i could but after i came back i had the same issue with friends and now i dont have any near here
Hi Corinne,
How are you? Haven't heard anything from you in a couple of days!
SK
How are you doing now?
Sunflower
Hi NaGrZi,
Sorry to hear about your current situation. Yes, it is very lonely when you are diagnosed. There is so much to get use to. As if you have to learn how to live again in a different body. I have been feeling better since I have joined this support group. My experience is that people tend to respond promptly with good advice. I hope you can find a little comfort in that. There is a chat feature where you can talk on line.
I know exactly what you mean Naomi. I'm 21 and had to end college early because of my pain and other symptoms. I stay home all the time unless my family wants to go do something or my boyfriend is here (his family lives in Jamaica so over the summer he goes there) and wants to go somewhere. People I thought were my friends don't talk to me anymore. And I don't feel comfortable enough to go out and try to make new ones for the fear they won't understand or just find me weird. So the only people contact I have is either with family or my boyfriend or online. But even with them I can feel alone. The only person I can really talk to is my boyfriend because it feels like he is the only that gets it most of the time (not even my own family fully understands). I'm not sure what advice I can give to help since I'm dealing with the same exact thing and have yet to find a solution. All I can say is, I know it's difficult and you can feel alone sometimes, but just know that there are many people just like you and there is always someone to talk to if you know where to look. Don't let people like that bring you down. If they were true friends, they would take the time to at least try to understand what you are going through.
Hi ladies,
I want to start by saying that my worst symptoms started when I was 21 years old and I remeber the loneliness and sense of isolation. The loneliness lasted for a few years. It is hard learning to live differently. And if you don't have a cast or a bald head most people just don't get it. Back then no one was able to diagnose it. I had it for 6 years before they told me what it was. I am now 45 years old and I look back and realize it was hard that no one would understand but my boyfriend. I am glad I had him in my life because now I have nice memories. As time goes by you will encounter some people who are sympathetic. Many that are not. I did get use to living with this. I have had some years where I was able to manage it. ( I really did my research ) I subscribed to the Fibromyalgia Network and the information was very helpful. It went wild again after I had my son in 2005. I am optimistic now because I finally found some meds that get it under control enough to live a little. Don't dispair. I encountered another flare and got it under control in 6 hours. I remember the flares lasting 3 or 4 days. I count my blessings when I realize there are those who have additional illnesses like asthma. No two fibro conditions are the same.
Hey NaGrZi,
How are you feeling? Haven't heard from you in a while, hope it is because you are feeling good and out having some fun! Check in with us when you can, let us know what's up!
Wishing you good things!
SK
Yes! It's hard because no one who doesn't suffer with something like this can really understand it. I am just so tired and in so much pain that I can't really do much socially anymore. I'm 18, I've been suffering for a few years and I have practically no friends now because I just don't have the energy. It's like you said.. very short and awkward conversations and not very often. I try to reach out but there isn't enough of a relationship left with them to save, and I'm just so tired. What's worse is that my mom yells at me for being too lazy, for not being consistent enough, punishes me for it. She tries to say she understands but she doesn't, and I know she can't but the fact that she gets angry at me and chastises me about those things really frustrates me. Does she think I don't know that I'm failing in life? Do my friends not know that I want to hangout with them.. Do they think I act like this because I choose to?
..sorry I got a little off topic. I guess it just frustrates me how very little people even try to understand, even those close to us..
Hi Rachel,
You actually have stayed right on target! It is all part of it! You are so young to be dealing with this! What has brought you to this, can you put your finger on it, an accident, an injury? Such a heavy thing to deal with at any age! Perhaps your Mom should join to listen to some of us, huh?
There is just about always someone here to talk to, to vent to, who will understand, really understand!! You will make new friends, real friends now. It is a tough process, but you will put things back together, and find the strength, it is there, you have to dig for it!
I hope that your Mom comes to a better understanding of your condition, but you please understand that she is trying to shape you into a strong self-sufficient woman! It is her job as a Mom.
Does she go with you to the Doctor, perhaps you need to bring this up when you are there next time, for the Doc to shed some light on this to your Mom?
I feel your pain, I hope that you feel better soon, and that a new understanding will happen to the rest of this world about the people who are struggling to be well!
Big hugs to you!
SK