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Life With Lupus

Learning how to cope


#1

Hi. Like many/all of you, I was diagnosed with lupus. Looking back it makes sense that I probably developed lupus around the age of 15 but I wasn’t diagnosed until the age of 19. I’m 20 now and it hasn’t gotten any easier. I was supposed to play D2 college sports. I was a straight A physics major who was involved in clubs and a sorority. I feel like my life was completely stripped from me and I don’t know how to accept that this is my new life. A few weeks ago I checked myself in for a suicide intervention. I guess I’m doing better in the sense that I don’t want to die, but I also don’t want to live this life. I’m now failing out of school and will most likely have to take a medical leave after this semester. I’m devastated. My friends at school were the only thing keeping me afloat, but I can’t even make it to classes anymore or do homework or really focus on anything. I don’t know how to explain my feelings to my friends and family. I have a really difficult time telling them how I feel because I know that since there is nothing they can do to help, all I would be doing by telling them is making them worry and be upset. I had a boyfriend and he was really supportive about my lupus at first. He was always trying to research ways and go out of his way to find any possible way to help no matter how small. Eventually it got to him that I wasn’t getting better. It was harder for him to know that I was never going to get better. He started getting frustrated, feeling like I wasn’t trying hard enough. It got to the point where he just couldn’t be with me anymore; he cracked. I understood that it was hard for him. He wanted to fix me so bad and it broke him when he couldn’t. When we broke up, he was so furious with me, he said every mean thing to me he could. I guess it was easier for him to hate me than to care and worry. But hearing the person you love tell you that you are a parasite to everyone around you is hard. I tried so hard to keep a happy face. I never wanted people to know how I felt, so to be told that all I did was drag people down with me was hard. I felt like all I was doing on this earth is bringing people down. Then he continued on to say that he couldn’t wait until the day the lupus finally caused my kidneys to fail (I’ve been hospitalized multiple times for kidney infections and have permanent scarring). This was someone who I trusted and who knew me well. I just don’t know how to cope with everything that has happened and has been happening. I don’t want to feel like a burden. I’ve felt like that for enough of my life and I promised myself when I got to college I would keep my pain to myself so others wouldn’t have to feel it too. I guess I just want to know how everyone else is dealing with it and being so strong when I just feel like such a failure. Any and all advice will be appreciated. Thank you.


#2

Hello, i’m sorry you feel so helpless. You say that youve had lupus since yoi were 15 and was officially diagnosed last year. You were achieving great things while you had lupus but before you receivex your diagnosis. Was it the medicine that caused the shift? You should discuss with your doc. Something since you were diagnosed changed. It really sounds like depression to me but this is something for your doc to figure out.

I havent personally noticed any difference after i was diagnosed. For me, it just explained why i still had low thyroid symptoms although i was maintaining my levels. I am on plaquenil and the only side effect is skin discoloration. Perhaps i am just “lucky” ~ an odd thing to say with a lupus diagnosis.

Good luck to you. I hope your doc helps you find your way back…
Kim


#3

Hello. I am sorry for what you have been going through. I know it because i went through similar stuff. However there are a few things that helped me cope up.

  1. Stress always pushed me to bigger and badder flares. Learn to say no, don’t take unnecessary stress.
  2. Understand your limits. Being a sports person, the biggest blow to me was restricted limits. I made it to nationals and had to give up sports. But hey! Its ok. We define our limits. Limits never define us. If you can excel in one field, why can’t you in another?
  3. Exercise. It is a crucial thing for us lupies. Never skip on workouts. If you are in pain, just walk slowly for 20 min. If you are in lesser pain walk 40. Exercise not only helps in coping with the condition, relax your muscles, manage weight but also lifts mood which results in lesser stress and equals to fewer flares.
  4. Grow a skin of rhinoceros. Yes! You read it right. Ignore what people say. Unless they feel the same pain as we do (i would never wish anyone to feel it) they won’t know what we go through every single day. You never pay attention to the rants and yelling of a 5 yr old do you? Think of them as 5yr old with no understanding and just ignore.
  5. Vent out. No need to bury all the fear, pain and frustration. Sometimes an outlet is the best coping mechanism. Share it with a good friend. If you fear he/she may get tired of the rants over time, share it here. We all are in the same boat and understand. Just vent it all out.
  6. Diet. Take care of your diet. Going vegetarian helped me a bit i would say. My doctor asked me to give up animal protein and it did made a change. Now i can see a difference if i eat even a bit of animal protein, i grow sick. So maybe research over the possibility of going vegetarian. You may even try to go gluten free.
  7. Sleep. Fix your hours and never compromise on your sleep. It is very very important for your well being. Few sleepless nights may push you into another flare.
  8. Listen to your body. Do not push it when it says it needs a break.
  9. Smile. A lot. Be around positive people. Read positive quotes. Be happy. It really kills the wolf.

Hope to see you feeling better soon. Warm hugs…


#4

Thank you for the wonderful advice. Tomorrow will be a huge day for me as I am finally going to see a rheumatologist who maybe can give advice to a type of diet and just give me some guidance. This flare has just progressively gotten worse over the past few months and I just really want one day to remember what life used to feel like. I also have a counselor so that I can vent because I just hate sharing my pain with my loved ones. Thank you for your reply and may you keep your strength through this journey.


#5

Thank you so much for your reply. Tomorrow I see a rheumatologist so I can only hope he will be able to help. This flare I’ve been experiencing has just been going on for so long and it just keeps getting worse.


#6

Be encouraged Audreyann17, you are not alone on this journey. I have been dealing with health issues for 19 years. One thing I have learned is to never give up on yourself. Learn about illness, pay attention to your body, talk to your doctor and surround yourself with people who truly love. Even with SLE, I went back to school and obtain my bachelor degree, worked full time while raising 3 daughters. It was very hard but I really wanted that degree. My husband was not in agreement but he later understood that this was not about him or the children. It was about my hopes and dreams despite my health issues. You are stronger than you think.


#7

Thank you so much for sharing your journey with me. You’re strength is an inspiration. Thank you❤️


#8

So how was it? Sorry its a bit late response. Been caught up with hell lot of things. Hope you are doing better with answers and healthcare


#9

The new doctor added some new medication on top of the plaquenil after getting some lab results back and at the start of the year I have a bunch of tests coming up, so hopefully I’ll be feeling better soon. Thank you!


#10

Hi Audrey dear. Thank you for sharing your story with us. You seem like a brave person to me. i was very disturbed by what your ex boyfriend said to you. I want you to know that people like that are not healthy to be around. Do not allow him to dictate to you how you should feel or tell you the person that you are. You are the only person who has the right to decide how you should feel, and i know, like everybody else in the world, you want to feel contentedness and happiness. Am i right?
Life is about ups and downs. You shouldn’t allow people to be in your life that can not stand with you in your hard times. True friends or loved ones are those who don’t put conditions on you in order to show you love and kindness. The truth is, even if you din’t have lupus and you came across another worldly problem, i bet he would’ve acted the same indecent way he did with you. Let not him or anybody else make you feel lesser for having lupus. It could’ve happened to anyone and it is not your fault. You must acknowledge, how mean people behave, is not your fault. It has nothing to do with you. Keep your head up. You deserve the world. You are beautiful. lupus or without lupus. You deserve to be treated like a queen. Being strong is knowing yourself and your worth and not allowing anyone to treat you less than you deserve. You my friend, shall not stand for any kind of abuse. just cause.


#11

Hello, honestly I’m also going almost the exact same things,diagnosed at 15 but felt like I had it 2 years ago. I felt like I could achieve many thing and make my parents proud, but now I can barely pass. It also sucks that I have terrible luck as i always get sick on exam days and apparently our school policy is if you miss the resit = no more chances, end up being sick that day too. Just try to be as positive as you ever could. I always tell myself I know I should be depressed/stressed right now since any normal human would, but if I did it would make things worse, so I kinda set a “restriction” on my mind that it’s not allowed to get upset, if that made any sense. Telling myself this one thing helps, that I’m glad that I was born with lupus and am the human I am today who doesn’t make fun of others who are also sick or going through life changing disasters, rather than being born as someone healthy who ended up causing misery and ruining many lives. Just try your hardest and always remember your not at fault for failing, lupus is, the only thing you can do wrong is stop trying.


#12

Hi Audre,

I hope you are doing better than you were in October. I am 25 and understand almost every struggle you stated.You are not alone. Remember that you are strong and capable and that lupus does not define you. There will continue to be ups and downs, but even with lupus, there are ups! You got this! Thank you for sharing your story!