Living with lupus brings plenty of frustrations. Finding moments of optimism when you’re feeling down is a key part of the battle.
Fatigue, flares, medication side effects, physical challenges… there are plenty of frustrations to overcome when living with lupus. Remaining optimistic can be hard, but it’s worth it.
Research has even shown that optimism can be good for your health, lowering blood pressure and decreasing the risk of heart disease. Still, it doesn’t change that sometimes you just want to scream or cry ????
Also, if you’re feeling particularly down, consider connecting with a mental health professional. Check out the FAQ answered by a licensed clinical social worker.
In this month’s LupusCorner Q&A Forum, Lupus Warriors share their personal challenges and the parts of life that help them overcome.
Wow loved reading all that! We are all alike in so many many ways. Thanks Brett there is some solace in feeling more alike than different.
Thank you all for sharing your true feelings. I know it is easy to just say “I am fine” & leave it at that when asked how I am. I feel better knowing that I am not alone in this battle, that many others are fighting this same disease. Trying to stay positive about life in general without knowing how I will feel tmr is the hardest. I make plans and look firward to them with great anticipation and most of the time I can achieve whatever it is that I planned. Only about 30% of the time( right now ) I have to cancel or postpone because of my lupus or fatigue. That sucks! Especially when I try to explain why I need to cancel, my friends do not fully understand the fatigue part of this disease. I feel like they think I am lazy or just do not want to participate in whatever the plan is… even a couple of my siblings simply do not get it. Went on our sibling yearly camping trip last month. I actually did better than I thought I would to be honest. I managed to keep up with everyone during the day but by dinnertime /late afternoon, I could feel my body telling me to slow down or I would not be able to do anything the next day so I quietly got into my tent or lounge chair and took a nap for an hour. Afterward feeling much better, recharged I joined my siblings for dinner. I was asked by 3 of them “why I didn’t want to go with them to do whatever they did while I was napping? I explained (as I have numerous times before about lupus & the fatigue, that if I do not listen to my body then I will not be able to participate in anything the next day or possibly have to leave and go home from pushing my body too far”..) so, when my body starts telling me to slow down I listen to it. In the past I have ignored my body telling/warning me only to get sick or so tired that I literally will sleep for 2 days straight. So if i need a nap in the afternoon to participate in our family camping trip that is what I will do. Because the other choice is not a choice…. frustrating & sad that my siblings do not understand, especially since 1 of them works in the medical field. I do have a younger sister who does understand and I know I can always depend on her.
I know stress is my biggest trigger that and over doing whatever I am trying to do when I ignore my body telling me to stop. I just want to be normal again, not have to worry about down time or explain why I need a break… or how I overdid the day before so now I have to rest or the fatigue and pain will take me out for much longer..
I do wish other people understood what it feels like to be judged and not understood that I have no real control over this disease. I might seem like I am fine but inside I am not… that makes me sad. For my grandkids who knew me before my onset of symptoms, they have a hard time seeing the difference, for my youngest grandson I have alot of guilt over not being able to do with him what I was able to do with the other kids… not fair, but I am alive and on most days still active so that is a blessing. I am most days still positive, I could be stuck inside in bed…would hate that!!
So thank you for sharing and understanding. I get what each person has said here. Just know you are not alone even when you feel like you are.
So true. The guilt of not being what I was or being able to be a full version of me for them…,.,
It all makes me soo happy to hear that we are all in this together but also very sad to hear that we are all in this pain together too. I personally feel mostly sad and upset with medications everyday and feeling unhappy with how i feel with my body, not so much that i have gained weight but how Im actually feel inside besides the flare ups. AND also feeling like im a victum or feeling stupid when I try to explain to others how I feel. And as I am talking I feel like they think I trying to play this victum card. When in real life they just lack educational information about what Lupus is. It makes me mad when ppl say ” you will be ok” “You are fine” WE ARE ALL DIFFERENT WE ALL HAVE DIFFERENT SYMTOMS. But overall get ur facts right and dont judge us. ANYWAYS Thank you all for being here and supporting each other when others just dont get it.
It is so amazing how much all of us are alike but yet live in different area’s. This disease is horrible to live with, and this forum helps us get some insight that we are not alone in our journey, Thank You Brett for setting this up for us to compare our “issues and compaints” to, I know I appreciate it..
Thank you for reading and participating. We are glad to have you, and everyone else, be a part of this community!
Amen … trying to explain lupus to people is like getting an agnostic or atheist to understand the concept of God. ‘But you look great and seem just fine… you cannot be ill… you are just making it up …. you are lazy … lupus is not a thing’.
It is frustrating having to live with lupus. It is heading banging hard even with the best positive mindset. Not having the blazing energy I used to have. Not being in charge of myself shocks me daily and leaves me debilitated and overwhelmed most days but I get up each day and keep trying despite this awful needy condition. Despite the constant civil war as someone mentioned above. This is because I have no choice and know nothing else but to keep trying.
I barely remember the days when I could just up and go. In some ways looking back I must have had it longer than the day of diagnosis.
This condition has stolen my essence and I would not wish it on my worst enemy if I had one to wish anyone on.
We keep going on because we don’t know anything else. You are all my heroes for still standing in the face of the pain, the isolation, the hopelessness, the fatigue and all I barely have energy to state. You Rock!!!!! Rock on ✊Crazies ???? because you have to be a tad Loopy to think you can outrun Lupus for a whole week. Much love wherever you are ????????????????????????????????
Truly, I’m in Alaska so I don’t get much fellowship or others who understand and my husband has decided that it’s not worthy of his consideration so I feel good to see other talk about similar experiences. Thank you all and much love, En. You said it very well.
Interesting and helpful read. Good timing since I am currently fighting flu like symptoms that I normally would have fought off with no problem but is really reading havoc with me for now 4 weeks. Hard to stay positive at times like these but this reminds me I am not alone in this fight.
Wow I have persons who share things with me.
Is very important to share impressions with the others when you suffer from something, more over abt lupus. Is not a simple disease. It takes time to learn how to live with it. People don’t understand you most of time because you can look beautiful on outside but inside you feel bad: fatigue, i cannot focus on imp things, lack of sleep, anxiety and depression.
Is not easy at all. Talking with people having the same symptoms, it helps a lot.
absolutely love reading this! i feel at ease knowing that there are actually others who feel the same as me abt lupus. we need more awareness around the world!! especially in Asia!
Thanks for sharing and being part of the LupusCorner community! I’m glad that it was valuable to hear from other people with lupus. We are working on more of these Q&A Forum articles. You’re absolutely right – there is a huge need for more awareness!
-Brett
Reading these comments help me deal with my feelings about the disease. Not being able to plan anything, even doctor appointments is frustrating for me.
I’m really glad I have joined this forum! It is helpful to see how others handle this insidious and often misunderstood disease. Namaste warriors????
We are glad to have you! Thanks for sharing and please let me know if there are topics that you would like us to cover
-Brett