How did you make your family understand?

Discussion in 'General Health & Wellness' started by JBL, Sep 3, 2008.

  1. JBL

    JBL New Member

    I have been able to convince my husband and kids that chronic fatigue is real, but my extended family, who don't see me day-to-day, say things to me that reveal they don't understand what I'm dealing with.

    They don't really have to understand, but it does bother me, and I wonder how other people have explained it.

    My family seem to think that I'm tired because I'm fat, and fat because I'm lazy. They love me, but they keep encouraging me to work out at the gym, or advise me not to buy junk food. (I don't buy junk food!) They have told me that exercise will cure that tired feeling I have when I come home from work. It's hard to explain the difference between normal fatigue and what I'm dealing with. They seem to think my daily nap is just a sign of getting into a bad routine where I think I need a nap, and if I would just get busier I'd be fine.

    I think they mean well. I just get frustrated when they don't understand me, or maybe don't believe me. Maybe because I'm the youngest, they tend to think they know better than I do.

    Does anyone else struggle with this frustration? Do you just let it go, or do you keep trying to make them understand? If you have been successful, I'd love to know what you said or did. Thanks! --Jean

  2. stick2013

    stick2013 Member

    I think that you are beating a dead horse here. They can't, won't or don't want to understand, and nothing that you can say or do is going to change that fact. Yes it sucks, but it's also the truth.

    You can beat your head against the wall all you want trying to make them understand and the only thing you will achieve is a headache.

    You can only control YOU, YOUR thoughts, YOUR willingness to learn and no one else's.

    I know how frustrating this is for all of us that have Fibro or CF, because I have Fibro. Yes I get frustrated too, but I have learn to eliminate the toxic people from my life... It makes living a whole lot easier for me.

    Hang in there... I will say this though...Exercise does help. Just do what you can....and don't over do.
  3. CKater

    CKater New Member

    Have you tried giving them any written information on CF? That might help. Sometimes what we say has little impact on our loved ones and they need to see something in print..ha. I know how hard it is, my immediate family is really understanding, but the rest as much as they love me don't really understand it and always say "you're always tired". Well I am! It is frustrating, but I think the thing to keep in mind is that you're the one dealing with this, and you cannot make people understand it especially since sometimes it's hard for even us to understand. I will say, once I gave my mom, dad, and sister something I printed off the internet they did seem a bit more understanding of it. Maybe it's something to consider.
  4. BethM

    BethM New Member

    Hello, Jean. Yes, it's difficult to explain the fatigue to most people. I had some success with sending this story to friends and family, some of whom sent letters that basically said "NOW I understand!" They all seemed to appreciate my effort, at any rate. Some people just cannot get it, and as someone else said, avoidance of them is your best option.

    Anyway, here is the story, which I originally found on the fibro board here.

    Here is the story about Spoons:

    My best friend and I were in the diner talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

    As I went to take some of my medicine with a snack as I usually did, she watched me this time, with a kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

    As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

    At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices, or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of choice, a gift most people take for granted.

    Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

    She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

    I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

    I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

    I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

    We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

    When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

    I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

    Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

    After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

    Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons."
  5. TwoCatDoctors

    TwoCatDoctors New Member

    I'm so sorry for what you are going through. I agree with Stick and insensitive and uncaring people will always be that way. They could have looked up your condition long before now and gotten "informed" but they're not interested in doing so. They have wrongly placed themselves as doctors and come to "their medical conclusion" even though it is the wrong one. I am permanently disabled and have lupus.

    I have told other disabled people that sometimes it is best to set boundaries and NOT get into discussions of your illness with relatives and friends because some will use it against you or treat you poorly, think you are faking, or they become doctors and draw their own conclusions they tell you --as you see happening.

    What you can do now is speak up and say "my illness is not open for discussion" and HOLD THE LINE ON THAT and refuse to speak about it to them and refuse to listen to comments about it. Please take back your power in this to stop people from thinking they have to the right to come to your home and openly judge you as if they had medical degrees. If they won't stop talking about your illness, tell them they need to leave now and get them out the door.

    Please draw the line and refuse to take this verbal abuse any longer--and it most certainly is verbal abuse of you. You are a good person, and you are one of the many, many people who have "invisible disabling ailments" and that doesn't entitle anyone to make irrational judgments that you are fat, that being fat is causing it and stupid ideas such as that. You deserve respect as you are very worthwhile and valuable. YOU GO GIRL!!!! Many hugs.
  6. Jayna

    Jayna New Member

    in a simple way they can easily grasp. I am a research fanatic and used to go into long-winded explanations of mitochondrial dysfunction and oxygen-deprivation and so on. But people glazed over after the first sentence. Eventually, with my dh's help, I figured out a couple of simple explanations that most people can grasp:

    1. My batteries are permanently stuck on trickle-charge. No matter how fast or how often I drain them by moving around, I can't make them produce any more energy any faster.

    2. I have a Rolls Royce body with a lawnmower engine. Just rolling out of bed in the morning in the morning burns up most of my tiny little gas tank.

    And some people just aren't going to get it no matter how simple the explanation. We 'look fine' therefore we must be fine. (This persistent belief in external appearances is how we end up with the government we do... )
  7. 30feeling80

    30feeling80 New Member

    I understand your struggle.

    I've faced the same struggle and still am not sure if they understand. I have explained it like I have to my doctors; like moving through molasses. I even called the fire department and had them check my house for gasses, I thought I was being poisoned. It feels like working against gravity 10 times more than anything natural.

    Everyone else seems to have the 'answers', but none of them have every had to deal with this. There is a letter on the net to 'normals' about fms and cfs. I had to give one to my mother in law and asked her to read it carefully, and re read it if she ever got frustrated with me.

    It's a constant battle we face and 'they' may never understand. But we're here for you. Wish I could help more. Good luck.

    30 feeling 80
  8. jaltair

    jaltair New Member

    More like being in a time warp with everything going by fast but unable to move fast enough (like you are in slow motion and everyone and everything else is in fast). It seems like time goes by but I don't get everything done! I can't 'cause my body won't keep up.

    Just a thought on your thread!
  9. Squeak1111

    Squeak1111 New Member

    Sadly so many of us are dealing with the same issues as you. My mother-in-law just recently said to me that she didn't know what Fibromyalgia was and that she's been lucky she has nothing wrong with her, I won't go into the tone of her voice here when she said this to me. I think so many people in this world are selfish, plan and simple. I read every one of the responses here and I agreed with them all. Explain it once to them, if they care enough about you they will research it. If a person makes you feel bad, walk away, you owe them nothing! One day they might be dealing with their own health problems and believe me you will pop into their mind.

    I am so glad that your husband and children understand that is the most important.

    Oh, and the two doctors that told me I had Fibromyalgia, don't really believe in it!

  10. sick~kitty

    sick~kitty New Member

    After all these years, DH understands perfectly - sometimes better than I do. I don't think my mother ever got it, though I was probably too brain-fogged to explain things very well. Fortunately my brothers & sisters understand a lot better.

    Anyway, I like the simple explanations. I'll try to remember the trickle batteries and the RR/lawnmower. I say I get a day's worth of energy over the period of a week - as long as every little thing goes right. But the least little thing can upset that, and I don't get that much.
  11. froggypiano

    froggypiano New Member

    I have tried to explain my condition to my family over and over. I come from a very strong country family that works from daylight to dark and I am the baby of the family. I have always been sick. I was premature and I never caught up to my brothers and sister. They have picked on me all of my life saying I'm lazy and spoiled. It has hurt me so much that I just hide in my house and don't answer my phone sometimes because my mom will call to give me "advice"
    It's all in my head and I just need to get busy and I will feel better.
    I found the explanation of FM from another comment and I emailed it to them. My husband says he understands and my daughter is very protective of me, but I feel like I'm letting them down so much. I just have so much pain and sadness inside. I feel like my heart is breaking.