No Support System

By CommunityMember34859d

1 min read

I was diagnosed with lupus in October 2019 and it’s been rough. Every time I try and explain it to a few family members and especially my husband. He thinks he knows it all and tells me not to blame everything on lupus.. which I don't. Most of the time I just don't say anything when I’m not feeling well. Can anyone here relate or share any suggestions for how to handle this? Thanks in advance

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Racquel H. Dozier Moderator & Contributor
<inline-mention username="CommunityMember34859d" user-id="4688286"/> I am so sorry to hear about the struggles of having support. I am glad you are here where support is plentiful. I found that family and friends were the hardest to understand my lupus journey. I think it was because they were used to seeing me strong and moving. I had to really set up a presentation to explain lupus and how it affects my body. I also would ask them to accompany me on my visits. I asked the doctor to explain what could happen. This brought them to a realistic and honest view of what's going on. I also wrote letters to those that mattered about how I feel daily. It's so hard to handle not being believed. I believe education is the key. It takes some time and it has to be done constantly. My family and friends still forget that I have some challenges and I don't hesitate to remind them. Hope this helps some. ~Racquel~ <a href='https://lupus.net' target='_blank'>lupus.net</a> team member
1. CommunityMember34859d Member
 <inline-mention username="Racquel H. Dozier" user-id="2041433"/> Appreciate the reply back. I asked my husband to go to an appointment with me, but he hasn’t been personal doctor takes so long and he’s not a very patient person.
2. Racquel H. Dozier Moderator & Contributor
 <inline-mention username="CommunityMember34859d" user-id="4688286"/> I understand. It can be so difficult to be patient especially at the doctors office that can be so slow. I hope that it begins to work out for you. ~Racquel~ <a href='https://lupus.net' target='_blank'>lupus.net</a> team member
sesebabe27 Member
Honestly I've been dealing with lupus for over fifteen years now I was diagnosed at fifteen I'm 33 I've died 4 times I'm, on dialysis, caught COVID-19 had to rehabilitate in a nursing home, I've been in numerous nursing homes, I'm on dialysis this has been my life. Everytime I'm in the hospital to long confined to a bed it's too a nursing home for rehab I've dealt with alot throughout my life believe it's hard, I'm trying to get a kidney transplant but covid messed up the process i just wanna be a normal person or just live my life without precautions and problems 💔 😢😢
1. Racquel H. Dozier Moderator & Contributor
 <inline-mention username="sesebabe27" user-id="2043911"/> I am sending you all of the hugs I can muster up through the internet. You are going through so much and it can surely be overwhelming. We are here if you need to talk. It can be so lonely and scary on this lupus journey so we can use all the support we can get. Life without precautions and problems would be great so agree . Please reach out if you ever need a listening ear or understanding voice. ~Racquel ~ <a href='https://lupus.net' target='_blank'>lupus.net</a> team member 
2. Cazmarglom Member
 <inline-mention username="sesebabe27" user-id="2043911"/> god bless you .I pray for a transplant for you .x my son had one over ten years ago now .I count my blessings every day xx 😘💖
1ndun2001 Member
I believe family is most unsympathetic No most un-empathetic if that's a word - it is now lol funny...speaking to a family member, who asked how I was..(wrong question)..but I told the truth and the response I got was "oh I know someone who has that" my first thought NOT spoken out loud was You Sure Do! I now LOL bc no other way around that, especially with my dysfunctional family. Lupus is a never knowing what's next moment. I found that groups like this are such a helpful place to be in those moments it helps to get through, understand, and receive empathy from those who care bc they understand, not bc they know someone. There are Good 👍 things ahead.
1. GabbyFormica Community Admin
 <inline-mention username="1ndun2001" user-id="6740415"/>, Its so hard to explain to someone who isn't living with it everyday.... The ignorance of some people is astounding. We hear you. You are not alone! Good things are ahead! Gabby (team member)