Life with Lupus 22 Years & Counting

By MrsMurray74

1 min read

Living with life after finding out I had lupus has changed my life for the worse.

Lacking support

My family life is not what it used to be, and my husband acts as if I am always lying. I have lost many friends and family members. No one seems to understand my ups and downs. Everything is downplayed when it comes to my illness. I have lost myself. I feel so alone and incomplete. It took me many years to be diagnosed finally, and then the real roller coaster started. I think that this illness has taken control and a hold of my life. Thanks to having grandchildren I think I have somewhat of my life back.

Feeling alone

I often hide my feelings and emotions. I am deeply depressed with no way out. I have no one to talk to, I don't feel that therapists are listening to me so I don't reach out. The only person in my life that I could depend on has passed away, leaving me with a feeling of hopelessness. I just do nothing. I have no outlets and don't really know what to do at this point but to continue to pray and try to live life the best I can.

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GabbyFormica Community Admin
<inline-mention username="MrsMurray74" user-id="2042378"/>, My heart goes out to you as I read your story. Lupus is a cruel and complex condition that no one should have to shoulder alone. I'm sorry you haven't been met with the unconditional support you deserve from your husband and other friends and family. Please know that we are here to listen and support you as best we can. Feelings of depression and hopelessness are not uncommon for folks in our community. Several of our patient leaders have written about their experiences managing depression alongside lupus, here is just one example: <a href="https://lupus.net/living/depression" target="_blank" rel="noopener noreferrer ugc">https://lupus.net/living/depression</a>. Thank you for bravely sharing your experience with us. It's so important for these types of discussions to take place so that others in the community who can relate know that they are not alone in this feeling either 💜 Sending gentle hugs to you, Gabby (team member)
MrsMurray74 Member
Thank you so much Gabby 💜💪🏾 it means a lot to me knowing that all I'm experiencing is normal and people actually believe me I have helping my husband and taking care of other my whole life he had two strokes and on dialysis and still thinks Im faking daily thanks to my grandkids I don't give up 
1. GabbyFormica Community Admin
 <inline-mention username="MrsMurray74" user-id="2042378"/>, I can't imagine how you manage to take care of your own health needs, your husband's health needs in his post-stroke recovery, and keep up with your grandkids. You are a true warrior! Make sure you are taking time to be gentle with yourself and treat yourself with the same kind of love and attention you give to your loved ones. Wishing you a flare-free weekend! Gabby (team member)
2. MrsMurray74 Member
 <inline-mention username="GabbyFormica" user-id="4217065"/> thank you so much I b just give it all to God and take it day by day
Racquel H. Dozier Moderator & Contributor
<inline-mention username="MrsMurray74" user-id="2042378"/> gentle hugs and complete understanding for all you have said. I'm sorry you are feeling so heavy ladened and lack of support. It's so hard to get out of thiaw feelings. Your feelings are valid and you are definitely not alone. We are hear if you need to talk and release without judgement but with real understanding. I hope you are able to find someone to talk to to lift the depression. Stay strong. We've got your back. ~Racquel~ <a href='https://lupus.net' target='_blank'>lupus.net</a> team member
Geri Rodriguez Moderator & Contributor
<inline-mention username="MrsMurray74" user-id="2042378"/> Sending you lots of love and support. Dealing with lupus is hard but not having a good support system is even harder. Your feelings are real and valid. If you need an outlet or someone to talk to we are all here. Open arms and all. You are not alone!! Stay strong warrior!! -Geri (<a href='https://lupus.net' target='_blank'>lupus.net</a>, team member)
CommunityMember172 Member
I feel like I am clawing my way up a jagged mountain and I don't even understand how I'm still alive. The constant pain & exhaustion. It has ruined my skin & is making my hair fall out. So much physical & mental issues at the same time~I keep declining and I feel like an burden. Total waste of space. It's like something is Just pushing as hard as possible to rip my claws off this non stop jagged edge-
1. CommunityMember172 Member
 <inline-mention username="Erin Rush" user-id="8414420"/> Thank you. Each new day that I wake up, I know that means I have another day to fight and continue trying to find what works best for me. And to continue the search for Specialist who are willing and qualified to do the tests needed & hopefully start finding ways that will help.
2. Erin Rush Community Admin
 <inline-mention username="CommunityMember172" user-id="4160733"/>, I hope you continue to wake up each day with some hope and optimism and that you find the specialist that can finally help you! You are not alone here! Best, Erin, Team Member.