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Frustrations (and Remaining Optimistic) with Lupus

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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.

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Ups, downs, and roundabouts of lupus

I am usually optimistic about the future of my battle with lupus

4/5 (agree)

What frustrates you the most about living with lupus?

Not knowing when and how disability benefits work in the case that I need it. What to do in the mean time so I’m not left financially devastated.

What picks you up when you are feeling down? How do you remain optimistic?

Getting up and going to work a shift at Starbucks. And my pup!

lupus tip-person-12

Katie G.

I am usually optimistic about the future of my battle with lupus

4/5 (agree)

What frustrates you the most about living with lupus?

Flares typically slow me down from my average pace of life and are an inconvenient reminder that I must be vigilant in minding my stressors, sleep, and triggers. I am used to “doing what I want” without thinking about how it will affect me, but now I have to and that slows me down (and if it doesn’t, it usually leads to a flare). I get frustrated with myself mostly and having to do things that are opposite my instinct/desire.

What picks you up when you are feeling down? How do you remain optimistic?

Sleep, friends, my husband, my dog, gardening, and alone time. I often just need to “reset” my perspective and remind myself that I am not my disease and slowing down/considering the impact things (e.g. staying up late, having that extra glass of wine) have on my health is not a bad thing…they are just new things.

Diana G.

I am usually optimistic about the future of my battle with lupus

2/5 (disagree)

What frustrates you the most about living with lupus?

Having to live day by day, without planning ahead – future is too uncertain – or looking back – memory is too poor.

What picks you up when you are feeling down? How do you remain optimistic?

I try to focus on some fun activity which for me is walking (usually just around the block) and taking pictures of flowers, or doing art (drawing, painting, or just coloring), or something with music (singing, playing the piano, or just listening).

lupus tips-person-24

Predict the unpredictable

I am usually optimistic about the future of my battle with lupus

5/5 (strongly agree)

What frustrates you the most about living with lupus?

The unpredictability of a flare. That not a lot of people understand lupus and that you may look fine but there is a civil war going on inside of you

What picks you up when you are feeling down? How do you remain optimistic?

My family and friends. Funny shows/movies

lupuscorner-person23

Janell

I am usually optimistic about the future of my battle with lupus

4/5 (agree)

What frustrates you the most about living with lupus?

When I do have to go to ER due to issues, the doctors here look at you as if you have some disease that they are going to get. They have no idea how to help (I wonder why I even go – normally I don’t). Plus the everyday just not “feeling good.” I want to feel “normal” without all the medicine everyday..????but put a smile on to the next day..most of all..LIVE LIFE TO THE FULLEST, life is short.

What picks you up when you are feeling down? How do you remain optimistic?

Friends, and my dog Abby she is a 13 year old Golden Retriever..
Remaining, I don’t know that I do. I live one day at a time, have more than lupus in my health basket & it’s the only way to live. If my feet are on the floor every morning, it’s going to be a good day.

person 5

Sandra

I am usually optimistic about the future of my battle with lupus

3/5 (neutral)

What frustrates you the most about living with lupus?

Physical limitations and fatigue. I don’t have much desire to socialize.

What picks you up when you are feeling down? How do you remain optimistic?

Music and my job. I like that my job allows me to have somewhere to go each day outside of my home. It also allows me to live independently.

lupus tips-person-24

Jasrene

I am usually optimistic about the future of my battle with lupus

5/5 (strongly agree)

What frustrates you the most about living with lupus?

Going through all the pains and tiredness and looking perfectly fine to others.

What picks you up when you are feeling down? How do you remain optimistic?

Being able to still live like a normal person, walk, run, play, travel, I am so much more fortunate than many others.
Look forward to outings, make travel plans and look forward to them!

lupus tip-person-12

Courage under fire

I am usually optimistic about the future of my battle with lupus

2/5 (disagree)

What frustrates you the most about living with lupus?

Meds only provide some control – it’s so unpredictable. Plans and commitments fall through. And I get tired of hurting all the time. And pretending I’m OK.

What picks you up when you are feeling down? How do you remain optimistic?

I know I was really strong before the lupus, and brave. It hasn’t beaten me yet. I make myself get up and do something that reminds me I’m alive and life is beautiful. And I love my family too much to give up.

lupuscorner-person23

Lisa B.

I am usually optimistic about the future of my battle with lupus

4/5 (agree)

What frustrates you the most about living with lupus?

The unpredictability of the symptoms and related illnesses.

What picks you up when you are feeling down? How do you remain optimistic?

Laughing with my husband, cuddling my dog, praying and meditating. Plus, reminding myself that I have had better days before, and will again.

lupuscorner-person-30

Reality with lupus

I am usually optimistic about the future of my battle with lupus

5/5 (strongly agree)

What frustrates you the most about living with lupus?

The surprises it pulls on me. I’ll be doing just fine working, living life, etc., then boom (!) I’m in the hospital!
And then recovering…

What picks you up when you are feeling down? How do you remain optimistic?

Lots of good night rest.

lupus tip-person-2

Cindy J.

I am usually optimistic about the future of my battle with lupus

5/5 (strongly agree)

What frustrates you the most about living with lupus?

The fact that others don’t really understand the disease.

What picks you up when you are feeling down? How do you remain optimistic?

I generally don’t get down very often. It is what it is. I had a very influential grandma who battled two types of cancer and always maintained a positive attitude and the mentality that someone has it worse than you. So I try to remember that and how blessed I truly am.

lupus tip-person-12

Becky D.W.

I am usually optimistic about the future of my battle with lupus

3/5 (neutral)

What frustrates you the most about living with lupus?

Never knowing how I’ll feel from one day to the next. Or when I have anything go on in or on my body wondering if the cause is lupus or not.

What picks you up when you are feeling down? How do you remain optimistic?

My husband is reassuring and my grandkids love make me feel so warm and confident that I can face anything lupus throws my way.

lupuscorner-avatar-person25

Shakirah J.

I am usually optimistic about the future of my battle with lupus

5/5 (strongly agree)

What frustrates you the most about living with lupus?

The crazy flare ups and joint pain.

What picks you up when you are feeling down? How do you remain optimistic?

God has a plan for my life. I remind myself everyday of this. Have to keep pushing to find out what is is.

lupus tips-person-24

Robin M.

I am usually optimistic about the future of my battle with lupus

1/5 (strongly disagree)

What frustrates you the most about living with lupus?

The constant pain and never-ending exhaustion. Also not being able to run around playing with my youngest child, he’s only 6 and he will never know what it is to have a healthy “normal” mom

What picks you up when you are feeling down? How do you remain optimistic?

My son, reaching out to other lupus survivors and reading

lupuscorner-person-21

Cathy

I am usually optimistic about the future of my battle with lupus

2/5 (disagree)

What frustrates you the most about living with lupus?

The “unknown” and unpredictability of the disease.

What picks you up when you are feeling down? How do you remain optimistic?

Knowing that how I feel right now will pass with time, rest, and self-care. I try to stay optimistic by staying grateful for what I have and focusing on what I can do.

L W

I am usually optimistic about the future of my battle with lupus

3/5 (neutral)

What frustrates you the most about living with lupus?

Pain and no one understand what I am going though. Lack of support.

What picks you up when you are feeling down? How do you remain optimistic?

Playing with my Yorker. I look on the bright side of things, like being able to get out of bed in the morning and move. Makes for an optimistic day.

lupus tip-person-2

Okiesane

I am usually optimistic about the future of my battle with lupus

3/5 (neutral)

What frustrates you the most about living with lupus?

Not knowing when flare will happen and immunosuppression.

What picks you up when you are feeling down? How do you remain optimistic?

Just keep on swimming and trying to raise my 9yo daughter.

person-4

Anonymous

What frustrates you the most about living with lupus?

Days when I have to cancel plans due to being too fatigued

What picks you up when you are feeling down? How do you remain optimistic?

I try to meditate. I also listen to music. And I try to focus on what I can do vs what I can’t.

person-4

A bright future?

I am usually optimistic about the future of my battle with lupus

2/5 (disagree)

What frustrates you the most about living with lupus?

Fatigue and cognitive issues. Also the lack of control over when I have flares.

What picks you up when you are feeling down? How do you remain optimistic?

Talking and laughing with friends. I am not feeling optimistic right now

Anonymous

I am usually optimistic about the future of my battle with lupus

2/5 (disagree)

What frustrates you the most about living with lupus?

Fatigue. Knowing that I won’t die of lupus but of some failure caused by lupus and that lupus won’t be listed as the cause of death…

What picks you up when you are feeling down? How do you remain optimistic?

Feeling less tired some days. Other days I wonder if fighting this hard is worth the trouble.

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Thanks to everyone who shared their experiences with lupus!

Interested in contributing to the LupusCorner Q&A Forum? Send an email to hello@lupuscorner.com to get added to the mailing list!

Comments (16)

16 thoughts on “Frustrations (and Remaining Optimistic) with Lupus

  1. 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.

    1. 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.

  2. 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.

  3. 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..

  4. 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 ????????????????????????????????

    1. 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.

  5. 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.

  6. 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.

  7. 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!

    1. 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

  8. 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.

  9. 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????

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