Can anyone relate to this?

Name: Can anyone relate to this?
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Lupus is debilitating! Some people just not understand just because I try my hardest everyday to look good and keep up!

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juliet_1277 and 21 others like this

37 Comments

mitchellmm I totally understand what you are saying. Those of us with invisible illnesses find it difficult to explain to someone that we are sick when we actually look good. They don't see us on the bad days. :)

Jul 23Reply

adriennelohse Well you do look good! I'm sorry to hear of your illness. Tell them all to keep it to themselves! :)

Jul 23Reply

kaylaglazier "It's all in your head." "You need to get out and do stuff more." "Just come it'll be fun!" 😟😟😟 I could go on. But the WORST is when people say you don't look sick... It is infuriating. I don't have lupus but my upper body/spinal cord is all held up by titanium rods. People just don't understand what they can't see. I personally have stopped bothering to explain. I wish I had like an informational pamphlet to hand to person when they say such things. 💖

Jul 23Reply

whatsleft @adriennelohse Oh thanks so much ! You are so sweet! Have a great night 💕🍭🍦

Jul 23Reply

bellalize I can totally relate. My Leya has an invisible disease as well and it is terminal as well as progressive. I feel like screaming when people say "Oh she is just a bit behind but she looks just fine" or "She can't be sick, look at how cute" it angers me inside bc those ignorant responses are almost daily and yet they never see what she suffers through from day to night on her bad days. Sharon I commend you and think you are just beautiful inside and out. I will keep you in my prayers constantly.

Jul 23Reply

whatsleft @bellalize I know you understand! I always think of you too! You are also very strong! I am so sorry for your Leya! I will always keep her in my prayers and you too! Love Sharon 👍😂💞

Jul 24Reply

whatsleft @mitchellmm Hi! You are so right! On our bad days they have no clue! It sounds awful but even my hubby does not fully get it! He is an amazing guy! But he try's to push me and some days I get nothing done! Thank you so much! You take care and keep your chin up! If you ever need to chat! I am here! Have a great night 💕😘❤️

Jul 24Reply

mitchellmm I, too, don't bother to even tell people I am sick and I certainly don't tell them I have ME/CFS! I have heard it all. The worst for me is ... Oh, I get tIred too. It's totally different being exhausted to the point of being bed ridden several days a week. We have lived in our home for over 4 years and I have yet to share with anyone my illness. Luckily my kids and hubby understand and are supportive. Blessings all of you! Rest assured, I DO UNDERSTAND!

Jul 24Reply

thewispygypsy Oops! I just worry about my girls!

Jul 24Reply

laskinr @whatsleft Hi Sharon, I really don't know much about Lupus, but I just want to say "you go girl" 👍💙💕👍❤️💕👍💙💕. Btw, I think you look fabulous so you must be doing something right!!!

Jul 24Reply

whatsleft @laskinr Oh thanks so much! Some days I do not look so hot! You are so sweet! Thank you for caring! It is so nice to meet you! Have a nice night 💐💗

Jul 24Reply

mvoss6 @whatsleft Yes, I can. I have rheumatoid arthritis and I get those questions/statements a lot. Including "you're too young to have an old person disease". Hugs!! 💕🙏💕😊

Jul 25Reply

whatsleft @mvoss6 Oh Ya! And people think it is plain old arthritis! Wrong! Thanks so much for reaching out to me! It helps me when I chat with people that know what I am going through! Hugs! Have a great night 💕🍦💐

Jul 25Reply

abstractdreams Ditto.😒👎🏽

Aug 28Reply

ppppppppppppppp Same here. Not lupus but another invisible one.

Aug 30Reply

whatsleft @ppppppppppppppp Hi! I am so sorry to hear! I know every day is a struggle and so different! Stay strong! We are warriors 💜

Aug 30Reply

mollys3 I love this! I was diagnosed with Lupus about 9 yrs ago.After yrs of trying to find out what I had. I was blessed that my long time dr trusted that I felt crappy. He never intimated that it was all in my head! However, it was my dr husband that finely diagnosed me! 😊 I love that man! At one point I was told to go home and try enjoy my family/take care of business. It was 7 yrs ago and my lupus was bad!All I can say is no body is going to tell me to go home and die!how r u doing?

Sep 03Reply

whatsleft @mollys3 Hi! I am so sorry! I hope you are doing ok! It's just trying to find the balance and work with it! Everyday is a different! I went to 3 doctors before one found the lupus! I could not even walk! We cannot give up! We fight every day of our life no matter what we look like! Thanks for reaching out! It makes me feel better talking about it! Have a nice and happy day💗💕💖🌹

Sep 03Reply

mollys3 Aman! You're so right. You have a wonderful and very blessed day, as well!

Sep 03Reply

tezza630 A sweet friend of mind has lupus - she is gorgeous, looks healthy, does not complain, gave birth to three children regardless of risk to her own health and well being. Lupus does suck. You have every right to feel the way you do. Each day is a struggle, but you overcome it. I wish you all the best. 💚tari

Sep 04Reply

whatsleft @tezza630 Hi! Yes it does suck! Everyday is different from the next! You friend is amazing! I am so happy she is is a warrior! Thanks so much for your kindness ❤️

Sep 05Reply

tezza630 You're welcome. i'm sure you're a warrior as well. We all have our own hardships, some are just more obvious than others. Some suffer in silence. Some live it out loud. 💚

Sep 05Reply

kdferrell Yes! My mom has Lupus and all of the above apply!

Sep 16Reply

whatsleft @kdferrell Oh I am so sorry to hear! Give her a hug for me! And one for yourself 💜

Sep 16Reply

whatsleft @littlerose13 Oh please give her a big hug for me! Prayers for both of you! I hope she continues to do well💜💜💜💜

Oct 02Reply

whatsleft @littlerose13 You are absolutely right! We have to keep going no matter what the day brings on! I feel the same way! It does no good to stay in bed and have negative thoughts! Luv to you both! Stay strong 💜💜💗💗

Oct 02Reply

sonyalee101 Omg!!! It's not just me that goes through the things people say when you tell them that you have lupus!!!@whatsleft lol!!'

Oct 25Reply

whatsleft @sonyalee101 Hi! It really is an illness that people do not get! I am sorry to hear you go through it too! Everyday or even hours change in an instant! Thanks for reaching out to me! It really helps so much! Have a wonderful happy day💜💜💜💜

Oct 25Reply

sonyalee101 U2!😘💜💜💜

Oct 25Reply

koalaandkween I can totally relate. I have a rare brain tumor and while I have plenty of good days, the bad days are really bad. I never look sick, but this thing does terrible things to my body. It also makes me question every little illness along the way.

Feb 08Reply

whatsleft @koalaandkween I hear you, everyday we do not know what to expect when we get up! I try to be positive but some days it's tough! And nobody except the ones going through these problems really understand! I am sending hugs your way💕

Feb 08Reply

skvreeland 🌻Yes it is so, well, there is just not words to explain. I get so tired and withdrawn. I get sad, mad and frustrated because there are days or weeks even months that I am so off. My body doesn’t cooperate. My mind works against me. Inside I am waging war against myself. But on the outside I smile. When I have to fulfill the role I put on makeup. Dress. Fix my hair. I am in the middle of the Grand Canyon suspended in mid air.

Jul 02Reply

skvreeland I wait to see if I go up or down, draw nearer to normal or drown into the invisible current. I understood my old life and limitations. This new life is constantly changing. Shifting. I guess I am learning to not be a creature of habit. To be adaptable. There is always a plus. Love to you ladybug! 🐞

Jul 02Reply

whatsleft @skvreeland Hi! Thank you so much for sharing your story with me! I totally understand! I feel like I have no to hold me up when I need it! No one understands what happens to us day by day or hour by hour! We hold in our feeling and put on our happy face when we are so sad! But I somehow manage to move on!💜💜💜😘

Jul 03Reply

dagmarstone I can. It’s hard being disabled, and looking normal 😐

Nov 14Reply

twincherry11 @whatsleft Hi 👋🏼 I’m Laura-Lynn. I will never understand what you go through on a daily basis, or relate to constantly battling Lupus. Majority of people will never try and understand and put themselves in that persons shoes. Most importantly I hope you have someone who loves you unconditionally. My nephew was recently diagnosed with Lupus. At 13yrs old. I commend you for your courage.

Apr 22Reply

twincherry11 @whatsleft I heard this quote. I hope you find some joy close to your beautiful heart 💜 “ We Never Know How Strong We Are, Until Being Strong Is Our Only Option “ Faith: The Belief In Something, We Cannot See, Touch Or Taste Or Know What Will Be. But Believing Wholeheartedly, A Blessing In Disguise. Never Doubting Faith Is Our Next Chapter!!!

Apr 22Reply