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Lack of support affects my self esteem
9 Replies
kvc33 - February 14

The lack of support that I get from my family and my community makes me feel like an unworthy, unlovable human being. I am shocked by it every day. I feel like a child who wants to be comforted but almost everyone around me expects me to deal with life as though I am a normal capable adult. I am very ill and just want to put my head under the covers most of the time. It takes so much effort for me to behave like I've got it together but if I don't I will just be scorned. I really hate this life I'm living.

 

jrzgirl - February 15

Welcome kvc33,
You have found the perfect forum, everyone here is so kind,caring,loving and Supportive. I get no support from anybody especially my husband. I have not even been diagnosed yet, app't with Dr on the 5th of March. had all blood work done, they came back with Epstein- Barr, I do not have the symptoms of that. This has been going on for over a yr, since I broke my foot in Jan 08, and it has been down hill since then and many doctors who think I am crazy and looking for drugs, I take a very mild pain pill(RX) lasts about 3 hrs. It is so hard to explain how you feel when there are no visable signs, therefore they think it is all in our minds.

 

rhapsody - March 19

I know the feeling. Most mornings it's exhausting just pushing yourself to get out of bed. I have a lot of kids, and they all need me. My husband is verbally supportive, and helps with the housework to an extent, but at the same time, a lot of times he seems busy feeling sorry for how this affects him more than he is concerned about what I go thru. Especially the decline in my sex drive. Really now, how can you be enthused about sex when you can barely function thru a normal day?

 

powderblue - March 22

I'm sorry to hear your comments kvc33. Unfortunatetly there are very few people that can emphathise or try and understand a condition like fibromyalgia. It doesn't help that it doesn't have a very high status in the media either. When my health was worse I often used to think that it would be much easier dealing with a condition like cancer (and I worked in a cancer centre) because dealing with the humiliation of other's remarks and attitudes and having to try and explain yourself is not easy. At least people could understand if you have something they can identify with you. When I first got diagnosised with fibromyalgia I found my family not particularly supportive. My mother didn't deal that well with me not being well and told me comments like "my doctor doesn't believe in fibromyalgia or your brother (he was only 17) doesn't think you have anything wrong with you. She herself had ME (which at that time I didn't realise the link). As a child I found it hard to understand my mother's illness. My mother and I know talk about FMS and ME and it is nice to have someone who understands a chronic illness. Western culture teaches people that if they are sick they go to a doctor and they can take a pill or be cured and there is not much scope for people who don't get better straight away. I used to not tell people about FMS as it was the disease that people could never understand. It was easier to say I didn't want to do something than try and explain to them that I couldn't go sking because of my fibromyalgia. After a flare up a couple of years this time around I now tell people I have fibromyalgia. It is their problem if they can't understand and I feel that I owe it to other FMS sufferers to be honest about my condition. Many people will not understand why you can't do things or question if you are depressed or whatever. It's important to love yourself and try and love and accept your body even if it is not the body that you would wish. Dealing with the stress of other's reactions and not being supported can make your symptoms worse.

 

Libbyk - March 25

Hi Powderblue i was so touched by your comments i felt i had to reply. My first symtoms of FMS was depression, i was crying for no reason a bit like the baby blues, the pain started in my arms, shoulders and lower back. It took a year for an appointment with the gyno. During that time i went to see a Community Physiatric Nurse to treat the depression and this was the first time i had heard of FMS. I started my research and was diognosed one year later. My family are supportive although i feel i moan rather a lot as i cannot do the things i used to - i feel like an old women. I have had accupuncture physio massage but nothing helps the back pain, im sure my mother had FMS although she was never diognoised and my sister was diognoissed last year. Forgive me for rabbiting on but this is the first time i have opened up as people dont understand. Thanks for listening

 

solanadelfina - March 26

(Hug) There's nothing to forgive, this has been a great place to open up.

 

kvc33 - March 28

I spent today crying and screaming because I have severe premenstrual dysphoric disorder. It's like PMS only ten times worse. I told my boyfriend that I refuse to live this way anymore. For the last 25 years I have lived in poverty and illness and have had a horrible life. I have always paid my bills and never owed a dime. I made the decision today to go into debt because the stress of not having my needs met is killing me. I am so tired of denying myself things and counting my pennies that I would rather die than keep living like this. I bought myself a dozen roses and I think that really shocked him because he has never bought roses for me and I can't remember the last time ANYONE bought me roses. It was just something I had to do. Normally I buy cheap flowers for myself and i have to admit that it was hard to plunk down thirteen dollars for them but I decided that I'm worth it, dam it! Then I took him out to dinner and actually paid the bill myself. Again hard to do, but I refuse to go to my grave having never had any fun.

 

huskymom - April 4

dear KCV33, I know how you feel, I have always been very active in my community and with my sons sport events. I now find it hard to even get out of bed, and there are days when I do get up I have to walk with a walking cane. I am losing my family, I am about to file bankruptacy and do to the factory that I did work at, I was forced to return to school, which I am about to fail because of Fibro Fog. Some days I find it would be easier if my family would just put me into a nursing home and I am only 51 years old. I wish there was someway to get everyone to understand that because we look healthy that we are truely very ill. I hope you hang in there and maybe they might be able to find something that works better for fibro, than Cymbalta. Good luck and I wish you the best

 

lucyvanpelt - April 8

I know what you mean. The number of times I wish I was crippled coz that at least means that people can see.. But the worst part is that I don't look sick. I am being constantly told that I use fibro as an excuse to underachieve. My parents understand me. My 8 year old son is the biggest support I have( but I have panic attacks whenever he complains of pain). My husband tries to be supportive by leaving me well alone when I am in the peak of pain. But he has a traveling job and the onus of managing the house is mine.
I work part time. I earn a pittance as compared to what most of my peers earn. I couldn't stick on to a full time job because of fibro. My current boss is understanding most of the time. But even he will make cutting remarks about people who fake illness or can't cope with adversity. I have friends who after a fractured limb or sprained ankle or spondilytis get back to life and make it a point to tell me how brave they are to cope with their pain. Inference - you are such a coward. I try not to let these things affect me. But there are days when I just want to end it all.
Am sorry for rambling. But it is such a relief to actually share with people who understand

 

sadpanda - April 19

i feel ya. i do get support from my family but not so much from all the doctors i see. i've been trying to get disability for 5 years now and the doctors that ssdi have me see don't take me seriously. they say i'm fine and can work in a factory stuffing envelopes. i don't think that's a job anymore. most of the time i feel like staying in bed. i am tired of dealing with doctors that say it is all in my head. it gets depressing constantly feeling like you have to prove your pain and fatigue.

 

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