I'm having the hardest time getting emotional support from anyone in my life. No one understands which is understandable. My mom was in denail for about 6 months that anything was wrong with me which was so frustrating but then she eventually said that she came to terms with the fact that I'm not well and that I have fibromyalgia. Throughout the whole visit she had his back and not mine. She never once validated anything that I was saying. Once we left the office me being in tears, my mom told me that she doesnt think fibromyalgia exists either which turned my whole world upside down and left in my car as fast as I could because I was so hurt. Whenever shes around she gives me so much stress and hurts me emotionally rather than making me feel better. I wish people would stop "TRYING" to be emotionally supportive to me. Either be there for me or don't try at all. It sickens me because I can't even confide into my own mother about how shitty I feel all the time when she doesnt even believe that the disease I have is even real.
I am still struggling with the fibro idea myself. Its such a hard concept for some people especially if they don’t live thru the pain. I alternate from thinking I am flat out crazy to thinking there must be something horribly wrong with me that hasn’t been found yet and I live with the pain so I know the pain is real. It is so frustrating. I’m so sorry about the doctor and your mom. My family believes, especially my son who hears me cry when I get up in the morning and walk around but even in a few short months, they are frustrated because they expect me to get better.
I am so sorry to hear about your pain and lack of a support system. Please feel free to come to me or I’m sure anyone else and vent or just talk, I totally understand.
My mom was supportive at first and my whole family tries to be, but on certain days I can feel their irritation just upon walking into a room. I didn’t ask for fibromyalgia, nobody did. Sometimes I think they magically want me to be cured or ask if I’m in pain (yes all the time really) but if they don’t get the answer they wanted I get some pretty harsh and insensitive words thrown at me.
Having a support group of people who understand fibro and know exactly what your going through is something that I’m finding to be very important. I am relatively new to this site, but it has already helped me so much just to know that I am not totally alone.
Please just remember to take care of you first and put the outlandish opinions of others far from you. Fibro is bad enough without having people question how bad it is.
Blessings and prayers
Hi Megan. Sorry you're going through this. You don't say how old you are. Does your mom have to go with you to your appointments? What about your primary care physician? Do you like him/her? That's the person who should have your back. You should be able to talk to your PCP and if you can't, try looking for a new one.
Come here for emotional support. *gentle hugs*
HI MEGAN MY DADS THE SAME WAY HE CANT ACCEPT WHAT I CANT DO HE THINKS INSHOULD BE ABLE TO HELP HIM MOVE A QUEEN-SIZED MATTRESS AND BOXSPRINGS OR RUNNING THE VACUUM IM SO VERY FORTUNATE TO HAVE VERY HAPPY SUPPORTIVE LOVING CARING. PEOPLE IN MY LIFE I DONT KNOW WHAT ID DO WITHOUT THEM ESPECIALLY JOAN AND TOM WHOVE TAKEN ME TO THE NP A 4 HOUR ROUND TRIP I DONT ACKNKWLEDGE HIM OR HIS GIRLFRIEND THEYRE VERY NEGATIVE TOXIC POISON PEOPLE EHO SHOULD BE AVOIDED AT ALL COSTS MY SISTERS OR JOAN HAVE ALWAYS COME TO THE DR OR NP VISITS ITS TOO BAD BUT MY FORMER RBEUMI DID DIAG OSE ME WITH FIBRO YOURE IN MY THOUGHTS AND PRAYERS COME HERE WHENEVER YOU NEED ANYTHING
I understand. I spent so many years hearing that I was just lazy and I needed to do this and that and blaa blaa blaa... I finally just shut up. My response became "well I am just too lazy". I didn't have the energy to argue any more. Obviously no one really cared. I was even accused as being on drugs! (me?) Really?_ If you knew me at all you would know how ridiculous that is. I just deal with it all. I don't complain I just stop when I have to and do what I can and whatever anyone thinks is going to have to be their problem. I can get support from people who do understand and let the rest be.
Hi Megan,
So very sorry that you are not getting the support from your mom that you would like so much. Unfortunately, it doesn't always work out the way we would like. We all really do understand what you are going through as most of us have gotten the same responses from family and friends. As I continue to read discussions posted by members particularly on this subject of "little or no support" it's as if there is a handbook out there just for the responses they have. Most of them are the same...it's unbelievable!! My mom in the beginning accused me of becoming a drug addict...my sisters truly did not understand the depth of my pain because it's easy to forget or be in denial as they cannot see our illness. I also believe that family members have a hard time accepting that there is "no cure" for Fibro and their responses are out of their own frustration because they want the problem to go away as they cannot fix it! You received some good advice here and that is go where you will be supported. Here is a good safe place to vent and express your concerns and learn more about your condition. You can also learn ways to better manage your pain by listening to other Fibro sufferers who have been living this for many years. I would suggest you do find a new doctor who first believes in Fibro, understands your symptoms and will be compassionate another words who will be 100% in your court! If your mother cannot be there for you I would say do not share this part of your life with her as you will leave yourself open to more hurt. Please do come here anytime you need and you have also had a few nice invitations of friendship! Please keep us posted and I sincerely hope you will find a good pain management doctor! Gentle hugs...Sue (aka Dreamcatcher)
thanks kelly yea i feel like she isnt going to accept what is happening unless i'm close to dying as well. So just send me a message about your story about you and your husband when you got diagnosed
yea my boss "expects" me to get better like i just have the flu . I had to drill it in his head that I'm going to have this forever so don't have any expectations that Im going to magically heal.
Im sorry that you get harsh and insensitive words thrown at you, I get the same from my parents sometimes and I'd rather them just butt out of my business when it comes to my health because they are more detrimental than helpful. Just being a member here for a few days has already helped me so much thanks
hey liz Im 24 years old and all of a sudden my mom wants to go to allllllllll of my appointment which is what I don't want. I always leave my appointments with way less stress when I got alone. When I go with my mom I have a lot of anxiety and usually end up leaving in tears, frustration, anger, or emotionally drained. I have an appointment with a new primary doctor becuase my current primary care doctor doesnt seem to care about helping me anymore and just sends me away to other doctors so he doesn't have to deal with me.
thanks suzuq :)
ya my boyfriend always is wanting me to help out around the house and I do when I am capable, but when Im not capable and i tell him that I cant bend over really low because im in a lot of pain especially my back, he just rolls his eyes and says I never help out which is not true, i do help out its just that sometimes i physically can't unless he wants he to have tears falling down my face while trying to do help around the house so he is extremily frustrating to me sometimes and I'm tired to trying to explain myself to everyone about how i feel ect ect... I should have to keep explaining myself to people over and over when they already should know
yes my boyfriend has accused me of being a drug addict as well and it drives me nuts because I know I am not , I am just hurting so bad that If i didn't take my pain pills I would be bed ridden and not able to work. thanks
yes I have seen a neurologist but he wasn't really able to help me. Ive just been jumping around from doctor to doctor to try and find good ones that care and listen to me and want to help and are also very knowlagable about fibro, but it it taking a while to find them but I am optimistic that I will find them eventually, at least I know that I have a good manual physical therapist. Thank you all for all of your great advise It really means a lot. :)