Family and Friends that don't understand

[jennjenn35]

I have four beautiful children ages 6,8,10,12 and a wonderful husband that are all so sweet and understanding of my condition Fibro/CFS. My problem is my very large extended family and circle of friends that call or drop by almost daily to check on me as I lay on my couch. They all come with well meaning ideas or treatments, but sometimes I just want to scream at all of their insensitive solutions. They would die if I ever told them that, but I have gotten to the point where I screen all of my calls because it seems to add to my depression if I hear "what you need to do is....." My 10 year old son gets it better than most adults. This morning when I went into his room and said, "Time to wake up, I feel pretty good this morning and if you hop out now I will make your bed for you." He jumped out of his bed with his eyes still closed and said, "no mom you need to conserve your energy" It made me grateful to have such compassionate children, but feel overwhelmingly guilty that they have to even be aware of my illness. My eight year old made dinner tonight, and although I feel beaming with pride it makes me so sad at the same time. I am blessed to have such a sweet support system here at home, but it is the onslaught of family and friends that say such insensitive things daily that drive me crazy. How have any of you dealt with......... well insensitive advice?

 

[sassy13]

Same here. My husband and two boys, 17 and 13, get it. My other family members and friends mean their best but are no help at all. My aunt actually told my mother I was faking this. Why would anyone want to fake this. If I'm that great of an actress I need an award for best actress!
I feel guilty when I cannot do things too. Yesterday was a bad day. I could not even get off the couch. My husband is working two jobs to support us. He came home and started to clean the kitchen and I told him I will get it tomorrow because I feel so guiltjy, worthless, and a burden.
As far as explaining how it feels to lack energy to my husband and children, I used the "Spoon Theory". You can google it, but basically it means every activity we do requires a spoon such as washing your hair, fixing it, doing dishes, etc. At one time I had an infinate amount of spoons for the day. On days I over did it, I got a good nights sleep then I was refreshed and ready to go again. With a chronic illness, you cannot do that. You only have so many spoons for the day. When I wake up, I can tell how many spoons I will have that day. I have to make a decision on where to spend them. On days my kids have sports, I utilize as few spoons as possible just so I can go watch football.
My 13 year old had a wrestling tournament last weekend, I went for the entire day. I was in agony sitting on the bleachers. Not only in pain, but then fatigue also. Which I work really hard to hide in public.
When we got home,my son says. Mom I'm tired, I used all my spoons today. I was so excited to hear he actually gets it.
Last Christmas my sister in law, who has been a stay at home mom for years and has four children, gave me bubble bath from Bath and Body. She said she uses this to get through hard days. I was pretending to be thankful, but really? You want to compare having two autoimmune diseases ( PBC and psoriatic arthritis) as well as fibromyalgia and CFS, to being a healthy stay at home mom? Even my kids were insulted.
Thank goodness my sister has investigated my conditions. She lives out of town but we talk often. She knows I have to conserve energy and I have good and bad days.

 

[jennjenn35]

Same here. My husband and two boys, 17 and 13, get it. My other family members and friends mean their best but are no help at all. My aunt actually told my mother I was faking this. Why would anyone want to fake this. If I'm that great of an actress I need an award for best actress!
I feel guilty when I cannot do things too. Yesterday was a bad day. I could not even get off the couch. My husband is working two jobs to support us. He came home and started to clean the kitchen and I told him I will get it tomorrow because I feel so guiltjy, worthless, and a burden.
As far as explaining how it feels to lack energy to my husband and children, I used the "Spoon Theory". You can google it, but basically it means every activity we do requires a spoon such as washing your hair, fixing it, doing dishes, etc. At one time I had an infinate amount of spoons for the day. On days I over did it, I got a good nights sleep then I was refreshed and ready to go again. With a chronic illness, you cannot do that. You only have so many spoons for the day. When I wake up, I can tell how many spoons I will have that day. I have to make a decision on where to spend them. On days my kids have sports, I utilize as few spoons as possible just so I can go watch football.
My 13 year old had a wrestling tournament last weekend, I went for the entire day. I was in agony sitting on the bleachers. Not only in pain, but then fatigue also. Which I work really hard to hide in public.
When we got home,my son says. Mom I'm tired, I used all my spoons today. I was so excited to hear he actually gets it.
Last Christmas my sister in law, who has been a stay at home mom for years and has four children, gave me bubble bath from Bath and Body. She said she uses this to get through hard days. I was pretending to be thankful, but really? You want to compare having two autoimmune diseases ( PBC and psoriatic arthritis) as well as fibromyalgia and CFS, to being a healthy stay at home mom? Even my kids were insulted.
Thank goodness my sister has investigated my conditions. She lives out of town but we talk often. She knows I have to conserve energy and I have good and bad days.

Thank you so much! I googled the spoon theory and loved it! What a great way to explain to people that are close to me. I will be using this analogy to anyone that is interested

 

[Trellum]

To be honest I've stopped listening to the things my family says It has been all trial and error for me, because at first I had to put up with all their ''advice''. Some of those advices were really hurtful, and made me feel worse... and what is worse! Sometimes I felt so full of doubts and started to think so much! People should be more careful with what they say, but let's be realistic; that's not going to happen. That's why we must learn to ignore all that

By the way, you are so lucky for having that amazing little family Your kids sound like they're so wonderful!

 

[jcairns82]

Everyone's got an opinion/comment, but some just need to learn whether it's genuinely helpful. You may also want to look at their intent. Do you view it as positive? Then perhaps acknowledge that you appreciate their intent; however, their impact is not very positive. It took many years for me to learn this, as it can be increasingly frustrating dealing with others. When I started to just focus on their intention, it alleviated a lot of my anger. Which helped as anger leads to stress, which leads to pain for my body.

 

[mariposa]

I've learned that whether or not "helpful" friends and family actually get it, they *do* generally mean well when they try to give advice.

I think they often feel bad that they can't do anything to help so they look it up or hear things and pass it along. If it's something goofy like "I heard that spinning around three times and touching your nose with your thumb works, you should try it".. well, I really do receive that in the spirit it's given. I know it's silly and won't work, but most of the time the person is grasping at anything that might help.

Now that aunt sassy13 mentioned who told her mom she's faking... well that's a whole different matter and I don't let myself into their airspace.

 

[jennjenn35]

Thanks everyone. I truly appreciate knowing there are others can understand and relate. Thank you for the sweet compliment about my children. I think they are pretty great

 

[Fran]

First, I want to apologize on their behalf. My sister has fibromyalgia, and I was insensitive. Now, I You have myself have a mass on my spine, daily pain and I suffer. I worry I too am getting Fibromyalgia. Three of my aunts have it, all sisters, and my sister has it. Now I have symptoms, but I also have this mass. Now I realize how insensitive I was. I am sorry to her, and to your family. They just do not understand. They are ignorant of the fact, and how it feels.

You have every right to feel the way you do. The last thing you need when you are suffering is people beating you with good intentions, thinking they know better or just getting upset at you for not "getting better". I do hope they will understand one day, and I wish I had advice on how to help them get there. For me, it took serious illness for me to see. What I can say is this. Knowing you are not alone is important.

Your family can not help that they are ignorant. They could change how they treat you, it doesn't mean they will. However, finding support groups, such as this forum is great. Now that I am suffering the thing that makes me feel good is a sense of family and community. Knowing you can talk about what is going on without without being judged is healing. I hope to find that here, and I hope that you will, too!

 

[Amalia]

I think that we all deal with insensitive advice, either we're sick or not, there will always be someone out there saying 'what you need to do is...'. It drives me crazy too and I'm usually pretty straight forward telling them I didn't ask for advice so please keep it to yourself. I know some of them are very well intended but they should be aware of my feelings too. There are also nicer ways of letting them know they should cut down on ngiving advice. Try them.

 

[gracelyn]

Isn't it wonderful that someone gets it? I often feel that no one understands. When I am in severe pain, and someone asks me, "What's wrong?" I want to scream. Sometimes my facial expression may reflect the agony I am experiencing. That's when I get the "What's wrong". I have explained this over and over, however, the person seems to forget or think she has said something to cause me to have a certain expression on my face. Others seem to think that because I am still moving, I can do more and more thingsl. When I say no, some seem to be offended. My children are grown and live away from home. They seem to understand a little. My husband is in pain and is recovering from a very serious back sugery and the demands on me are overwhelming. I am still working full time, have to drive 45 miles one way, and I do not know how much longer I can keep up this pace. My husband seem to understand somewhat, but then he will ask me to do things that are not necessary or that he could do himself. He helps with cooking and that's about it. Thanks for listening! Needed to vent a bit.

 

[MercyL]

Insensitive advice seems to be one of the symptoms friends and family manifest when confronted with conditions, in others, they find either baffling or inconvenient. I have noticed that well meaning, friendly advice can turn to unreasonable demands and eventually a belief that there is no actual illness. I started nipping some of this in the bud by refusing to discuss my condition beyond a very few words.

I also screen my phone calls as a stress management tool, as do many perfectly healthy folk. I see no reason to feel guilty over doing what you find helpful, or avoiding things that are unnecessarily trying. It's difficult, but most people dealing with chronic conditions have to eliminate the toxic relationships scattered throughout their lives. This includes long standing friendships and relatives. You are doing what most of us must do at sometime during our lives.

I can identify with your feeling guilty over your children helping out, but having an 8 year old capable of fixing dinner is a dream come true, even if that dinner is scrambled eggs. Your having to allow your children to care for you and themselves more than most children must is a hidden gift for them. They'll have skills maturity beyond their peers and are learning a concern for others many adults never grasp.

It sounds like you know who the valuable people in your life are. In your shoes I might try asking those who have become irritants to stop offering advice because I must deal with that aspect of life on my own. To smooth any hurt feelings, assure them that you will ask them for advice when you feel the need, then move the conversation to a new topic!

 

[logy]

Congratulations on raising such wonderful children! And I agree with MercyL. Your children will develop high self esteem as they will see themselves as capable and skilled by learning tasks that other children their age don't have. When my daughter was 10 her step mom taught her how to do laundry. She came home and was so proud and she wanted to take over doing her laundry. And she would do some of mine. (I think she even did a better job than me!) They know you love them and you contribute to their lives in many other ways.

 

[kat744]

After I found out about my situation, I become restricted with the people I associate with. I quickly realized that people dont want to believe that I am sick and expect me to do things like them. So I decided that if one was a negative force in my life, then he/she was off my bus. Only close family members get second chances from me. One makes a choice to understand or not to understand me, so I can also make a choice of whom to associate with regardless or relation.

 

[mariposa]

After I found out about my situation, I become restricted with the people I associate with. I quickly realized that people dont want to believe that I am sick and expect me to do things like them. So I decided that if one was a negative force in my life, then he/she was off my bus.

Sometimes a decision like this becomes necessary, I agree. I've found that friends who really care and don't have selfish motives *do* understand and try to make things easier. If they're only concerned with things they want to do whether or not the other person feels up to it... well, they'd be off my bus, too.

 

[Friskykitty]

I just don't discuss my personal life issues/ in particular my health status with anyone. Yes, that's right- I keep all my personal information to myself and when questioned by my nosey Aunt Francis, I simply smile and tell her that " I prefer not to discuss it". Honestly, once I took control over who I confided in, I felt more powerful over the illness.
I do have a really good Dr., and I see a relaxation therapist once a month, but other than that, I don't dwell on my condition. If visitors stop by and I'm on the couch for the day, so what. Listen, you don't owe anyone anything! Stop trying to convince people who really don't care about you in the first place any explanation about Fibro and it's mean half sister- CFS. Worry only about yourself!