Hello Everyone. I've had a problem with friends not understanding my condition and it hurts really bad. I've had some say if I was taken off all those medications I probably wouldn't feel this way because they are side effects. I'm so tired of having to tell people over and over that my hair is falling out, or I'm too tired to keep my plans. I've had one person tell me they don't want to make plans with me because they can trust that I will keep it. It hurts. So, I'm having some family and friends get together for dinner tomorrow night and I printed off some simple information for them to take home and read what lupus is and how it affects me. I'm going to ask them if they will donate for a cure and then I'm going to see if anyone would like to become a team in walk/run the 5K as a team and get donations to help the cause. For those who couldn't come to the dinner, I'm going to email them. So, with all that said, has anyone come across non-supportiveness and how did you handle it all?
Oh, and I wanted to add that people get so frustrated with me because I can't remember things or use the wrong words when I want to say something. Then they lash out at me for saying "I told you, you don't listen". I do listen but I forget
U sound so much like me. Yes I forget the words I want to say and they yell at *SLOW DOWN * to me. Besides friends not understand neither do your family really. They say they do and they try but unless u walk in these shoes like we do u have no clue. I have notice of, of late they dont even ask how you r feeling because they know there will be a negative word coming from mouth. I dont mean to bring u down but its the fact that you need to find the power within. Its very hard and seems very lonely (trust me) I have and try to stop talking to the ppl that make me feel worse then I already do. BURDEN seems to be my hang up as I was a single mom of 3 for long time work hard from age 16. Now almost 30yrs later my life is crap no one hears me no one treats me as a important person anymore. So bottom line hun u can offer the info but u can’t drill in in there heads it might be after its to late. But hugs and good luck. Ps sorry for misspelled words lupus aint fun.
Often times, people act out over things they don't understand. I applaud you for wanting to help them to do so. But like Teena said, sometimes neither friends nor family get it. I also agree with finding power within. It's here where you find out who is truly there for you. It's hard, but I've learned to limit my time with those that suck the life out of me (even if it's family). At first, I felt bad for doing it. But now, I do not. If you find you can't get support and some form of understanding from those you are closest to, find that support elsewhere. You deserve that. I hope and pray that you will have people come forward and offer help/support. Remember, you can always come here too. If you've not read about 'the spoon theory', I'd recommend it. It can help you in this area also. Sometimes folks can surprise you when they learn what you are dealing with. Either way, know that you do deserve support, validation and understanding. My hope is you find it regardless of where it comes from.
Thank you both for responding. You two knew exactly what I've been feeling and it's not a fun thing to go through. It's bad enough dealing with your body but then when you have so many negatives that's even more difficult. My daughter will say the most hurtful things to me and I just be still and know she doesn't understand. Like ...You don't have a life, sorry I do. OR You're always in the hospital so that's why I didn't go see you this time. Things like that hurt and no matter how many time my husband and I sit down to speak with her, she says she gets it and then later that understanding is gone. The other thing that really crawls under my skin is when people ask how I am feeling, sometimes I'll just say good, and you? But, if I say something that really is affecting me that moment, they tell me, Oh hun, that's age for ya. I'm 45 and looking like a 70 yr old is not aging to me. It's the disease affecting my skin w/ rashes and exposure to sunlight. I'm not looking forward to summer at all because I have to wear long sleeves so lately with this hot weather, I go out just before sunset and do what I want to do outside. I'm so thankful I saw this blog sight that I can vent and hear other peoples stories. So many are similar and some are not and those I can learn from. Thanks for listening.
That sounds like an incredibly smart way to share the information. I would suggest taking some of the subjects that have been brought up on this site, and use some of the information that members have provided.
For example, as for forgetting things...that has to do when your Central Nervous System is being effected and also what causes "lupus fog". As your meds take more of an effect some of that may get better.
Fatigue doesn't only have to be because of the disease, but many of us suffer from anemia as well, which will know you over with a feather.
Different meds and how they make you feel...and most importantly how bad you feel off of them. That without them your lupus can flare and enflame your internal organs, which can lead to death. This is a serious disease and they need to understand just how serious.
Explain, that although you didn't ask for it to be this way, your life has taken a 180 degree turn and you trust the docs with your treatment, but you need them for moral support.
I told everyone how much they meant to me and that it's important for me to have them in my life. (Yes, I did something similar about 6 months ago).
My lupus is "robust" (dr. term) and I am using my time to enjoy positive experiences with my friends and loved ones, and I let them know that I wanted as much positivity in my life as possible and if that's not what they were there for, I wished them well and wished them on their way.
My circle is smaller, but stronger than ever.
A doctor at ohsu gave my sister A.m.p floracel (a natural product) It puts her into 100% remission as long as she take it at 12 capsule daily. If she stops her symptoms return. I use it personally for another autoimmune condition. If you want more info on how it has worked for her let me know. Have a great day! Jeff
Thank you all so much for your understanding and support and great info. I had my dinner tonight and it was so fun and social that it wasn’t the right time to get into it. I wrote a journal and I decided to send it to my friends n family by email. I also found out about a lupus walk in San Diego in July and I have five people already going. I was happy about that
Hi poker face,I deal with my lupus as if it doesn't exist to anyone but myself,I know it's a crappy way to cope..I do not talk to my family about it at all,I was raised in an environment where being sick was and is a sign of weakness..my mother said she got so tired of me being a sickly child she just did not want to deal anymore,she gave me to my dad,whom gave me to his mother most of the time..my gram passed when I was 23 and my dad when I was 25..my favorite brother who walked me through it all died in a tragic car accident and the rest of my siblings are to self centered to lift a finger to help or understand,I just spent 6 months in casts and my two brothers were asking for rides,cig money,grocery money,a place to live,never once asking if I needed anything..my one brother called every week for a ride and I would say".well I'm still in my casts and can't drive..he'd say,"we'll why sister"? "Oh just suck it up"!! You know you can drive you are just milking this lupus game for all it's worth!!!! I can hardly dress myself,I do have an amazing husband who thinks my remaining family members are pathetic..I started losing the use of my hands many years ago,I wear braces on both hands to get through the day..I do live by the motto: I am my own hero!! Fake it until you make it..I had my heart ablated 6 times,I sleep with oxygen,the lupus started on my heart at 16 yrs old and lungs..many challenges I try to take in stride,I cry alone and sometimes in front of my husband..I have taken to much pride in being a country girl I do and have paid a huge price for that..my left ankle is getting so bad,I'm having a hard time accepting the fact that I can't hold myself up on crutches so my ankle can rest..I have to admit when people ask me how I'm doing,I always,always say,I'm fine,doing great,living the dream..sometimes for myself,silence is golden..I have terrible coping skills so I just try to stuff everything that bugs me..I learned along time ago that being vocal in my family gets me no where...better to just sit and listen to the crap and move on..so stress full at times..some people thrive on drama..I think my biggest problem is I just can't seem to get out of gods way,I pray and lay things right at his feet,but I turn right around and take it back..why don't I trust enough???..hum,I'm not one to make excuses..I guess I have no answer..I think your idea is great,however my family wouldn't listen to me at dinner or read any hand outs I passed around.they would make short order of my hand out,paper air planes maybe? " you might be a redneck right??? I hope thing go well for you and your dinner party is a success,let me know how things go..
Well, the dinner was a nice time full of laughs and simply being with my friends and family made me feel good inside no paper handouts and no talking about my illness and how they can help. Instead, I allowed the evening go wherever it did and decided to send a heartfelt letter to all of the friends that used to bbe inn my life and gave the. A reason why. I also gave it to my friends ans family that who understand and also the ones in denial the way I was. So far, I’ve had great responses from everyone and I’ve got 9 people on a team to do the 5k walk for lupus in San Dieg, ca this July. I named my team “new creation”. I want to feel good about myself and hang onto the good that I have instead of always saying I can’t or isolate.
I’m so happy for you!!