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    Me, My Family, Friends, and Lupus
    Christine Miserandino posted:
    I am typing this from my mother's house. It is not at all unusual for me to be here when I am not feeling well. I am 33 years old, and yet, when my lupus flare comes, I head home. Sometimes I feel bad about going home to my parents. At a time when my parents should be retiring, they are still worrying about me and taking care of me.

    I try to be very independent. I try to not bother anyone with my illness or ask for help. But the truth is, as I slept this morning, my father did a load of my laundry. My mother is so experienced at managing my insurance claims, that she could be a professional in that field.

    With the best of intentions, I tend to "put up a front" and not tell the world when I am not feeling well. My family wants to know how I am. They want to help me, but they can't help me if they do not know what is going on with me. I recently learned that instead of avoiding a ringing phone, I need to answer it. Not answering the phone and not being completely honest when my family asks how I am feeling can make matters worse.

    Sometimes having brain fog is embarrassing. Those of us who have lupus don't want to talk about it. But when I become forgetful and miss an important date, it starts a vicious cycle -- the people who care about me worry that something bad has happened to me. I have learned that being straightforward to the point of spelling out how people can help me also improves the quality of my relationships.

    Not everyone is super supportive of a person who has lupus. I have lost friends due to my lupus -- because I would cancel plans, or couldn't go out for a drink or be in the sun, etc. Having lupus isn't fun! I have family members whom I am sure doubt the seriousness of my illness, and have their own opinions of how I should live my life.

    I try my best to keep those people who are members of my inner circle close to me. They are the ones who really love me and care about me. I try to be honest with them about my health. For the other people in my life who may not be the most positive, I am sure you can all relate with my typical answer when they ask how I am feeling. I just say, "Doin' fine."

    How do you deal with family or friends who are supportive of you -- or those people who are not supportive? Do you maintain an inner circle of people you know you can rely on for their love and support? Share your experiences with the community.
    - Christine Miserandino
    Unique9680 responded:
    Im very new to this site and im a male who was diagnosed with 2 types of lupus almost a year ago.My life has changed drastically since. Everything that u said in your statement reminds me of myself because i do the samething when people ask how im feeling. I always say im fine because i dont want people worrying about me or because i feel sometimes people really dont understand how much pain and how miserable i be all the time.. I try not to keep to people who are not supportive around because they would only add to the already miserable problems im already having. So i wouldnt add any more on top of what im dealing with. Keep as much as support around u as possible because we all need someone to lean on..
    lupylisa44 responded:
    I learned at a very young age who my REAL friends were! It was quite a valuable lesson that I have carried with me for the 27 years I have had lupus.

    How do I deal with people who are not supportive?
    "Broom 'em!!!" as in get rid of them! Life is to short to deal with people you don't like to be around!!!

    My inner circle, as you call it, is filled with people whom I love and respect and who love me for who I am, lupus and all!!!
    They all know that I can plan for something but never plan on it. So they don't get upset when we make plans and I have to cancel at the last minute.

    When those people ask how I am, I am totally honest with them. Because if I say I am fine, they know I'm lying because they can see it in my eyes or hear it in my voice. I have been blessed with wonderful people understand that lupus can affect me differently from day to day.

    My advice is to be up front and honest with your friends. The ones who stick by your are the real deal. the ones who don't?broom 'em!
    With love, with patience and with faith, we'll make our way.
    luhenderson responded:
    I don`t tell people I have lupus. My mom knows, but not really.
    jesslang replied to Unique9680's response:
    This is the first time on a site like this. But I am here for my husband of 19 yrs that was diagnosed with Lupus a year ago. He is riding a roller coaster and I am concerned. He is no longer taking the Placquenil because of the side effects. Plus it scared us both him just being on it. Unfortunately he is relying on pain meds and steroids to make it through the day. Which again scare me to death. I think this diagnosis is so fresh to me and him both we tend to flip flop back and forth with feeling that yes it will be managable then he gets these crash and burn days. What I really want to know is Do anyone else experience this sort of roller coaster ride? And is this really how he will have to spend the rest of his life?
    Christine Miserandino replied to jesslang's response:
    HI Everyone,

    If you haven't seen the newest WebMD Lupus comunity TV series on caregivers you are gonna love it! Well, at least I think it came out great and hey, my mom is in it so it has to be good!

    In the posts in this thread we hear from a wife of a lupus patient, a lupus patient that tells nobody and a person who tells everyone! wow what a group we are! That is what I think is so great about these message boards is that we can all learn from each other, even if we have different approaches on how we handle our lupus and our families.

    We all may do things different and have a different style to our personalities and our own unique family situations, but we can all learn little tips and help each other by supporting each other along the way.

    There is no right or wrong way to mix your lupus your friends and your family. You have to do what works for your life! So let's support each other along this crazy rollercoaster of life called lupus.

    Until next time, love and spoons ,

    kayjay61 replied to Christine Miserandino's response:
    Christine, I just watched the video and all I can say is,"Thank You!". I spend so much of my time feeling as though I am in the midst of a balancing act trying to manage my Lupus while trying to help my husband to also manage the the unwelcome guest called Lupus. I hate the sound track of my life that feels as though I am always saying that "I hurt.". I miss those days when the conversation in the room was our children's schedules, tasks that needed to be completed and plans for the future. Now that we are at the stage of our life when we thought we would be able to focus on just "couple time" Lupus is an intruder. I resent Lupus' presence and I try to act the way that I perceive to be normal, but without fail a flare will start from something as simple as a few too many minutes in the back yard without my hat. Please continue to provide resources for those caretaking heroes in our lives. My husband is my best friend and I worry about him and his emotional well being. Thank you once again and I just want you to know that your mom is adorable and a wonderful spokesperson for the Caretakers of America!
    anowlin responded:
    How do I "deal with family or friends who are supportive of you?" I don't have the energy to convince those who WON'T learn, that SLE is a real disease and what it is, what it does and how it effects me.

    That was a hard thing to 'let my brother go' and a few sisters go, too. (I didn't so much 'let go' of them, as I did forgave them for not understanding;all internal work).

    What a loss NOT to feel part of my family, but to be asked to their homes and share the holidays with them and their families...It is such a reminder that I don't have a family except for my husband and dog and I wish I could give him that family connection.Kind of a double or triple-edged sword.

    He occasionally takes his frustration out in rage, but I KNOW that I'm ALWAYS safe. I internalize my frustration, not good, but if I started to grieve EVERY loss, i'd be in therapy for life!
    Angelina1089 responded:
    I was diagnosed with Lupus when I was 19 my doctors says i must of had it atleast since i was 17. My mother and I have never had a good relationship, the main reason we talk is my three year old son. She was recently diagnosed with diabetes and has her own health problems. My doctor told me I should talk with my family about my illness I also have sjogrens syndrome. I try and talk to my mom about it and she will either act like she doesnt hear me walk away or change the subject. When im very sick and I go to my parents my mom acts like im making up that im extremely ill and tells me I just dont eat right. I dont know how to get her to understand or talk to me about it. My brother says maybe shes scarred but i honestly just feel like she does not care and thinks im making it up.
    lupylisa44 replied to Angelina1089's response:
    I am sorry your mom isn't being very understanding. Does she understand what lupus is? My mom was always blaming herself for "giving me lupus." I think she was very scared as well. Back then (1984) everything we read said lupus was a fatal disease. The she would get comfused and tell people that it was like AIDS (when in fact it;s directly opposite of it!) I was mortified! No matter how many times I tried to explain, that it is an OVERactive immune system and AIDS is an immune deficiency, she still didn't get it.

    I finally got her a book to read to help her understand lupus. It was called Q&A Everything You Need to Know About Lupus by Drs. Lahita and Phillips. It is very easy to read and understand.

    If you don't think she'll be receptive to reading it, you might want to try a pamphlet from the lupus foundation. here is the website to findthem:

    I hope this helps!

    With love, with patience and with faith, we'll make our way.
    Christine Miserandino replied to Angelina1089's response:
    Hi Angelina,

    I am sorry your mom isn't open to conversation and that she isnt as supportive as you would like. It is very hard to make people understand what we go through on a daily basis when living with lupus.

    I agree with Lisa, that maybe educating her on lupus will help her understand that it is real. The pamphlets are a good idea and even the book.

    I have asked my parents to come to doctors appointments with me so that they "hear it from the doctor directly" Sometimes it is hard to hear something from your own child. But when an authority or professional says something you kind of can't deny it. Just ask for a ride, and then have them in the room with you if you are comfortable.

    Lastly, sometimes you just can't make people understand. But what you can do is take care of yourself. Find support groups, turn to friends for understanding, find joy in your child, and come to these message boards for understanding from people like us who understand.

    Hope you are having a good day today!

    Love and Spoons ,
    An_240057 replied to Christine Miserandino's response:
    I absolutely LOVE the community TV series. I just found this web site and have listened to it already 2 times. I have had Lupus for 15 years and I am just now looking/getting into a support group. I have been in my own world trying to deal with it myself and just come to the realization that I need to start being more honest with my daughter, family and friends. The TV series has been an insipration me. THANKS and keep them coming.

    anowlin responded:
    "How do you deal with family or friends who are supportive of you -- or those people who are not supportive?"

    At a very young age, I was gravely injured and my siblings were deprived of a lot of needed attention. Now, when I'm older, I don't want attention and help; but there are times when I need it.

    Unfortunately, there are times that I really need their support, but i don't receive it. But, yet, I'm expected to be 150% interested in their lives, their children, their jobs and their personal lives 500% of the time. I do my level best not to burden them and like you, I go out of my way not rely on them, not to be needy, etc.

    So, how do I deal with this? While my Mom was alive, I grew closer and closer to her and my siblings were supportive. is the reason they aren't any longer due to Mom's death? I don't know, but from where I sit, if feels that way. My chief support is my husband, he's my Rock of Gibraltar, but there are times when he barely keeps his head above water

    Plus, it's not fair to have only one person as your support. There are support groups of MANY kinds and that's what I've become heavily involved in. I also write and blog and that is so cleansing for the soul!
    lupiesuzy responded:
    I have a few friends and they know and some have helped me a great deal, especially the roommate I had in college when I was diagnosed.

    My family is great. My mom has transversemylitis (an autoimmune disorder) so she knows what it's like and my dad has lived with her for over 35 years.

    I used to tell people at work, but got tired of the "I know someone with lupus," "how are you feeling today," and the general treatment with kid gloves, so when I transferred I decided to tell only my immediate supervisor since I felt she needed to know. Most people now just tell me I look tired when I'm having a bad day. Works for me!
    DoinTimeOnEarth responded:
    I'm with lupylisa44....BROOM 'EM! In my case, it's the family I have left (a sister who's bipolar & her 2 selfish children). Living across the hall from her for seven "hellish" years, I'm finally moving to a different county as soon as I can get it together. Having lupus, dealing with cronic fatigue and no help...I feel this is the Best thing I can do for my emotional and mental health. I would rather have Peace than be Right so turning the other cheek never worked in my favor. It only made her come at me more anywhere, anytime, in front of anyone. I'm moving where I don't know anyone or the neighborhood. I've always been the "Go To" person but the past several years of being kicked especially at my lowest point, I'm also dumping those who drained me with their childish behavior and selfish attitude.... so NO ONE is getting my new phone number or address. I know very well what it's like to be alone and isolated so I'm not afraid because this is what these 7 years have given me....THE RIGHT TO TAKE CARE OF MYSELF WITHOUT EXPLANATION OR EVER DEFENDING MYSELF TO ANYONE. Honestly, it never was what was said or done but the "why" behind it. I wondered why there was always so much disregard, cruelty and constant criticism. I never cared what people said or felt about me but I realized that her kids and friends started to treat me the same way to the point where I couldn't even have an opinion about something without getting berrated for it simply because I would refuse to argue or fight. I look forward to feeling peaceful since I won't be in anyone's range of fire and now can refuse any invitation to holiday gatherings, birthdays (especially mine) or others for that matter. I won't even have to pick up the phone since I'm not going to be living next to her. I have felt so much despair living here that I have contemplated suicide almost everyday and had to fight those thoughts and feelings alone. So anyone in the position I just explained, I hope you too have the opportunity to move away. It's much healthier to be alone and not be the object of anyone's abuse. I know I'm on my way to better health because I'm already Grateful and I still have so much work to do and moving can be so stressful in itself. But the thought of Never having to deal with the surrounding negativity again keeps me thinking about living instead of dying!
    Bless you all and my prayers for Good Health and a Support System to help you through ; )

    With Lupus

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    and friends.
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