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I am just a loner now because I've been left alonr so much. Being the Lighthouse for my family and nobody is a match of light 4 me

June 4
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MyLupusTeam

What you're feeling — that exhaustion of being everyone's light while standing in the dark yourself — is something so many people with lupus carry quietly. The bitterness that comes after years of feeling unseen is completely valid. That's not a character flaw, that's a wound.

Lupus is genuinely hard for others to Show Full Answer

What you're feeling — that exhaustion of being everyone's light while standing in the dark yourself — is something so many people with lupus carry quietly. The bitterness that comes after years of feeling unseen is completely valid. That's not a character flaw, that's a wound.

Lupus is genuinely hard for others to understand, especially because so much of the suffering is invisible. And when people finally "try," it can feel too little, too late.

A MyLupusTeam member put it simply: *"I am so tired of feeling bad and talking about it all the time. People don't understand unless they have lupus."*

Another shared: *"I feel very alone at times even when surrounded by people. It's hard to make others understand the pain and discomfort I feel every day."*

You are not alone in this, even when it feels that way. A few things that have helped others in similar situations:

- Letting go of the pressure to educate everyone around you
- Setting boundaries on how much emotional energy goes outward
- Finding even one person — online or in person — who truly gets it
- Allowing yourself to grieve the support you deserved and didn't get

That bitterness deserves acknowledgment, not suppression. Healing can't really begin until it's honored.

June 4
A MyLupusTeam Member

I totally understand nobody believed me that I was sick they all thought I was a hyperchondriac because nobody get sick that much and I'm by myself alot and that's ok when you get sick of trying to explain yourself but with this group your never alone you always have a friend I here for you and the best part of it all is you don't have to explain anything to me I believe you hope your having a good night

June 4
A MyLupusTeam Member

My friend Sabine is also sick with a rare disorder but she thankfully called an ambulance for me again yesterday Thursday June 4, today I found lots of useful information on how I can finally fight back against wrong diagnoses but she also send me explanations why Dr's do that, my case is too complex, they are overwhelmed thus just wanting to get rid of me as quick as possible. I could use a Natasha who is there for me like I was there for everybody, but that is not how things work. Dr Micah I think his name is, is a Rheumatologist online, who strongly advises to get rid of all toxic people in your life if you have one or more autoimmune diseases. He is sick himself, studied medicine to help himself. The film I'm watching on Netflix right now is called Miracles from Heaven

June 5
A MyLupusTeam Member

Dear friend ❤️
We are all in this TOGETHER. I hear and feel your pain and sorrow, your words are my words sometimes. But then I am presently watching an uplifting movie based on a true story of a Christian Family where the daughter was healed by God, there is no other explanation. In that movie it's said that God sends us daily miracles and that's true! We just have to open our hearts - our true eyes - in order to see His miracles. What miracles is God sending you? A person? An animal? An opportunity? A great discussion? For me it's this group here with many new friends who really understand me💜Modern technology brings us together, God loves people who come together for a loving, caring exchange❤️if you want my phone number or email please let me know

June 5
A MyLupusTeam Member

I'm glad you joined us here so we can stand in the gaps.

June 4

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