People thinking you're not trying, thinking you're just being lazy, blaming you

General
1

My mother constantly bitches and yells and tells me how I am not trying. I am 18 and I'm fighting tooth and nail to get out of my house. I don't have much money and my mother tears me down as much as she can. I don't even think she knows she's doing it. She always has such a condescending, closed minded attitude about everything regarding me being sick. She still wants to say i'm bipolar even after being told by multi psychiatrists that I have no psychiatric issues and am not anywhere close to being bipolar and have none of the characteristics of it.

I'm constantly being blamed for not trying and being treated as if i'm making it up. She supposedly knows someone with fibro and says how they fight it and have sick days whenever the weather is poor but are fighting it and i should be doing as well as them. She also likes to tell me how since I am young and her colleague is late-middle aged that i should be doing much much better and that if i am this bad now i might as well just give up on life because obviously i will never be capable of anything.

I have always loved dancing and I more than anything just want to dance and act and go where that takes me. She isn't even letting me move out and without money there is very little I can do to fight her.

Fibro took dance from me a year ago and I just want to take it back and do what I love. I cannot stand the thought of not being involved in the arts/media. I see the backup dancers on tv or the dance concerts and that's all I want. I don't care about being famous or making tons of money. I really just want to move to NY or LA and take classes and try to start a life for myself. I feel like I could do it and it would be great for me if only she could help me get on my feet financially.

Not only will she give me no help with money but she also won't allow me to leave; not for ny or la and not for college or anything else. I have no money, no car, no license and an environment making me more sick and miserable.

Then I have a mother yelling at me that I'm not trying and I'm lazy and blah blah blah when I am killing myself to get out of bed each day and putting myself through painful potential treatments like massage therapy and acupuncture and chiropractic work and injections and anything else the doctors or friends think might help me. Sometimes It's painful to the point that I can't contain it anymore and just can't handle it and I have an incredibly high pain tolerance and on top of that a resilience to suck it up and get through it.
I just.. I have no idea what to do or how to get her to understand that she doesn't understand. I've told her that it's really not possible for her to understand what it's like to have a chronic illness because she doesn't have one and that it is okay that she can't fully get what i'm going through. She still insists she does and that it's not bad and i'm being lazy, ect .
I just.. don't know anything anymore..

being confined and just being in this room day and night makes everything even harder. I just want to curl up and die most of the time because it would be better that this existence. Living this way is pointless and i'm soo tired and i'm fighting my hardest.. but what if my hardest just isn't good enough..?

2

Hi Rachel,

So sorry you are so frustrated, and not being able to move toward your dreams, and attain your goals right now is very discouraging. I also understand that you can become so sensitive that any slightly invasive treatment can set you through the ceiling.

So what about the pool? What about taking swimming lessons? I did it in my 50's and surely wasn't the only one, there were also many young people your age taking them. Membership at the Y for one month, with unlimited access to the pool would be about the cost of one of the treatments mentioned, and the lessons are very reasonably priced.

If there is a Doctor who is against this, I have not met them yet, but please ask, always ask the Doctor. I would still be there if I could be. Having Raynaud's the water temp, even in the heated pool, just became too cold and painful for me, so I am waiting to get back there, I loved it! The Rheumatologist told me to just give it a break, see where the Enbrel might take me...

I am very sorry that you are unable to have a better understanding with your Mom, hopefully that will change for you. I am very fortunate to have always had the greatest Mom, she has always been so supportive of me, and still is. I truly hope that will change for you. Perhaps you could take her to the Dr. with you, perhaps you could let the Dr know of this, most Drs are very wise, and can sometimes solve more than physical problems.

My very best to you,

SK

3

Hi Rachel,

How long has this been going on with your mom? Maybe SHE is having problems coming to terms with the Fibro & the fact that her daughter is suffering from it. Sometimes concern can manifest itself in the most absurd ways--you never know!

Has she stated her reason(s) for not wanting you to go to NY/LA? Perhaps she is afraid you will quickly burn out-even professional dancers who do not have FMS get very, very tired & hurt/sore from working out so much and so rigorously.

I too love dancing, but my passion is Ballet. I try to do the NYC ballet workout dvd's when I can/on good days (especially for a workout in Winter) and it is very 'zen' for me personally!

I get very riled up if anyone should so much as hint that I am 'lazy', let alone say it to my face! I am pretty easy-going, but can quickly become enraged about this particular put-down. I was never a lazy child, and I am not a lazy person. In fact, I'm more of a perfectionist than LAZY! I totally hear you on this one and I am appalled & very sorry your Mom refers to you as being lazy.

You are fighting the good fight against Fibro--my advice would be to save your energy to do that and not to fight your mom. It doesn't sound like there is much in the way of understanding from her; I would try my best not to engage in arguments with her. Save your strength for much better endeavors--for example, trying to find a way to obtain some source of income & get out of that toxic environment! I know--much easier said than done, but if you really are determined, try not to let your mother get in the way.

Feel free to contact me anytime--I was diagnosed when I was in my early 20's with FMS. Keep your chin up & know that you do have support here!!

Hugs,

Leslie

4

I got that from my dad and my manfriend (not as much and not as forward) when I started having problems. Well, my dad just stopped about 6 months ago. I started printing off as much as I could and having them read it. Of course, I was a mirror image of the articles.

My manfriend takes me to all my drs visits, and they have explained how painful it is. He knows I cannot lift pots and pans, etc. or I am in extreme pain. He now takes care of me. The tables have turned.

I wish you the best of luck. I just play one day at a time. Enjoy your life at your pace.

5

You have to know that trying your hardest is good enough. Your DOC. should have a talk with her, But I dont know if that will work. I know she wants to help you, but the way she is doing it is not helping. I have famly like that. It is hard to get them to understand just how bad it is. There is a rating scale on the web page under discussions,let her read that. also the group called fibofog has some grate info. But dont stop there give her so much info on it that she knows it as good as you do. You know her so you know how to get her to read it. I am 45 have ran fortune 500 com. shipping dep. I have mang. some of the bigest mall in the US. and now I am like you cant even do the thing I love. So you are not alone in this and I am glad I am not alone in this, dont let her ations bring you down. You know what you can and cant do. sorry about my spelling.

6

Okay, here goes. Is it possible that your mother is a rage-a-holic and gets a perverse pleasure out of tearing you down? Her concerns sound beyond the normal, when she's telling you that you are bipolar and yet your doctors have said otherwise. That could really affect how you view yourself (make you feel defective.) Look, you have a bad enough illness as it is, without being accused of having another illness. Why is your mother comfortable with thinking that you have bipolar disorder but not fibro? What is she getting out of this emotional exchange?

I always suggest that people print off conversations from this site to show to family members. Not sure if it would help with your mother, but worth a try, ESPECIALLY conversations from other young fibro sufferers - and sadly enough, there are a bunch of them.

I suppose that you could apply for welfare in order to get assistance with living on your own. But the housing situation is pretty tight. And it's only good for a few years, so it would only be a short-term "fix."

What about a part time job, if you're capable of doing it AND if anything is available? Or are you still in high school?

And finally, what about counseling either for you and/or the both of you? Your relationship with your mother is in a tough place right now, plus you have so much on your own plate.

7

Yes to all of this. Draginfli, you are a real survivor and I respect you for that. You are on your way to a better life now. I'm really impressed by how you handled/analyzed this. It takes a tough mind to be able to reject such abuse.

Draginfli's response is good. Shows you CAN triumph even when you are living with a destructive person.

I have found that anti-depressants help me deal with a person who has been destructive to me in my life. I now have self esteem and can feel "ok" despite the years of abuse. And they help me to not give that person the power to hurt me anymore. Rachel, I'm not saying you should or shouldn't use them. My point is that you need to find a place inside of yourself where you TAKE BACK THE POWER from your mother so you know that YOU are ok and your mother is the one with the problem.

8

I am so glad for the well thought out replies to your statements. Myself all I wanted to do was cry for all you are going through.

9

You are so right on all that. I am so lucky to have my son and his wife. They know how much I use to work and now. I am blessed with all this and know.

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Reading your post made me very sad that you have a mother who does not believe you and give you the support, care and love that a mother should be doing naturally, with an illness or not. Is she actually telling you to give up on life? I don't know what kind of mother would say that to her daughter. First of all, if you have been diagnosed with fibro, you should show your mother your doctor's report or better yet, take your mother to your doctor so he can explain to her about this illness and how chronic it is. Would she believe your doctor?? If she won't do that, she is not a very caring mother. Next, is there any family members you could live with, your father, maybe? Or, an aunt or uncle close by? You need to be around people who will understand your limitations and love and support you, not put you down. If your pain is that bad, I don't know how you could be thinking of moving, getting a place to live, and a job. You cannot do this alone. It would be too stressful and the more stress you put yourself under, the worse your pain will be. Do you have an older brother or sister who could help you? I know you love dancing, but I really don't know how you could pursue your dream if your pain is consistent?? You have a lot of things to think about, dear, but you are young and don't give up on life. Are you on any medications? It took me 2 years to find the right protocol for me. It is very frustrating. My illness is still chronic but now I can live with it. Best exercise is a heated pool! Okay, take care and maybe you can even show your mother this post and see what people are saying to support you. Maybe she will get it then, hopefully.

11

Being in a pool has been suggested by my neurologist, however it's hard to get to one. I'm a member of our local YMCA, but it doesn't have a pool ( of course, it's like the only YMCA without one). My mom bitches all the time about how we have this membership and i need to start going to the weight room and working out there and stuff. I don't even try to explain why this is not plausible anymore because she just keeps pushing the topic.

I don't believe her intentions are bad or that she is trying to cause harm or anything. I also don't think she is really trying to understand and help me. My view of things is that she's stressed and truely does believe that i'm just slacking and i need to get my act together and do better.. so what does she do? She yells and reprimands because she probably thinks it'll get a result.. because she believes that it is all in my control.

As far as dance and stuff; I am proposing going to college a few hours away and then transferring to a college in la or ny to dance. I cannot decide which I'd rather be in.. NY seems more logical and there are some great schools there, but for some reason i feel a pull to LA, it just feels right.

Anyways.. I'm not proposing I get on a plane and fly away and try to work. Being out of dance training for pretty much a year would make that impossible, and being in a college would also give me a structure and formal instruction on a regular basis. I would not be able to lay in bed, even if it wasn't totally my choice to be there.

Yes, I am in a lot of pain but I manage it and the Lyrica is helping me. My mother also likes to attack Lyrica as a drug. It isn't perfect and I do have some side effects, but it's helped more than anything else I have tried (and I have tried A LOTTTTTT), and it makes me significantly less fatigued and in less pain. Since getting up to 200mg a day I have taken an amazingly less amount of painkillers.. like before i was taking 2-6 thousand mg a day, now i'm taking a ■■■■■■■■ per week, max, sometimes not any (usually if it rains i take more than average, but that's understandable).
So, pretty much, the pain is manageable and I can fight through it. I manage it and it is not an obstacle that will prevent me from dancing.

Getting out of here is definitively going to be the hardest part of all this. I'm alone in this fight and I have no money. No money, no car/license, no job (not for lack of trying), this all makes things near impossible. near. I'm not ready to give up my one true passion though. The Fibro will have to fight harder if it wants to take that from me. Hopefully I can make some new friends along the way so I won't be alone throughout things anymore (well, alone with my cat, who really is amazing and knows when i'm down and how to cheer me up).

12

Dear Rachel,

I am a Mother, Grandmother and Great grandmother, I surely do NOT ever want to step on your dreams, but please do yourself a favor before you set out to go there. Make certain that you are aware of the cost of living there, the cost of real estate and apartment rentals and the credit checks, job references, security deposits, leases and just how much emphasis is put on so many things.

I admire your goals, your strength, and your determination, just make sure you can start taking some baby steps before you jump into a self imposed catastrophy!

This is not meant to be a DOWNER for you, this is just a bit of experience and the wisdom that comes from it, and meant with all kindness and good intentions for your success in life!

OBTW, I also take Lyrica, it is very good for nerve pain, and surely helps elimination of 'pain pills'.

Wishing you the best,

SK

13

Dear Rachel,

I am a Mother and a Grandmother. I have Fibro and so does my daughter. It affects us all differently.

Print off all the information you can from chat rooms about how fibro affects us, with emphasis as close to your symptoms as possible, to counter "her friend who works and is older than you."

I am not taking your Mother's side here, I am just offering an opinion she may not want you to move out because she is afraid you will not be able to take care of yourself. After my daughter moved back home and was ready to move out I was worried she would not be able to take care of herself and my granddaughter, however she did. Not as well as I would have liked but she did.

Another question do you receive or does your mother receive Social Security or goverment benifits because you are disabled?? If that is the case if you move out she loses those benifits and Fibromyalgia is harder to prove than Bipolar. You are 18 the next time you have a Dr. appt. set up an appt with an attorney also to discuss filing for Social Security. Your disability began before you were 18, so you can draw off of your parents Social Security. An attorney can probally give you the best direction, get a referral from someone who has used one or from your Dr. You can usually talk to them for free and if they don't think you have a case they will not take it. But, they can give you some good advice.

14

Absolutely Petunia, counseling is a great idea, it is a relationship worth straightening out, you only ever get one Mom and she only ever gets one you.

A mother's goal is to raise motivated, self relliant children, but when there is a Doctor diagnosed illness, it is a game changer. I surely hope that your situation can soon change for the better.

15

Hugs2u you are so kind it makes my heart leaps with laughter at your kindness. thank you, you dont see it much in this world today. thank you agen.

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The past three messages have been wonderful. I hope that Rachel reads each response and weighs your words carefully. There is much there that can help her. You ladies have some wonderful wisdom!

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What a fantastic idea and resource! Wow! You've done a wonderful thing. I hope that Rachel reaches out, as she might be able to get even better care and meds. Kids her age deserve it. We all do, of course, but it's especially heartbreaking to see kids go through this.

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This is good to know. I hope she inquires. Another good avenue.

Dotty, I'm sorry that you and your daughter both have fibro. What an awful curse for two of the same family to possess!

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Wonderful post. Amazing that 169 people have already read this!

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Hi Rachel. I can relate to you. I am 22 but my troubles began around 14-15 years old. In the beginning I had no diagnosis because for one reason or the other, no doctor here ever considered fibromyalgia (perhaps because I was so young). My parents went back and forth between being very concerned to thinking I just didn't want to be in high school for social reasons to just about anything else. I only ever had my dad pull the lazy and you just need to fight it card on me once or twice and that was before my diagnosis. After my diagnosis, I am lucky in that my mom was very knowledgable in this disease as was my dad due to his association with Lyrica. Since then they have been supportive in me phasing in and out of college semesters depending on how I am doing. But this is because they are educated on it. Your mom may think she knows about fibromyalgia because she knows one person. We are not all the same! Not even close! We all have some similar symptoms but some have symptoms others don't have or experience them differently and at different severities. The severity of the disease can also jump around depending on environmental factors and your body. Pushing yourself TOO hard can just make things worse off. It sounds like your mom needs serious education in the disease. I would first recommend something to explain to her exactly WHAT fibromyalgia is. I wouldn't spend much time on cookie cutter symptoms. I'd go to personal experiences from patients. It is much more personal and seems more severe than the bland and dry terms in a medical article can. Hell if you want me to talk to her I certainly will.

As far as medications go, are you taking any? There are 3 approved to treat fibromyalgia. Just like antidepressants, everyone is different and no one medication regimen will fit everyone. If you find fatigue is a lot of your problem, talk to your doctor about Provigil. I take that daily for energy and that is really the only reason I can even get out of bed.

I understand why you want to move out. My therapist (which I also recommend getting one for at least yourself if not the both of you) wants me to move out but I am not making enough money for that. Mostly she wants me to move out to get out of the consistent family drama, as stress can agitate the condition. If you want to go to college, that is a very feasible option for moving out. While getting put in a dorm room doesn't always sound pleasant, it is probably less stressful than living with your mom. And with financial aid, you would be able to do lots of things for yourself. I also want to say that you are 18. You are a legal adult. You parents can't prevent you from doing anything legally. The only way they can is by not giving you help.