Battling with lupus

[1shz]

Iam Jacqueline Stecie Beyard from Malawi. I have been fighting with lupus for so long without knowing. I have been given wrong medications and nobody understood what i was going through.

People thought i was crazy. Been having sharp pains on my palms, chest, pelvis and it kept on changing from organ to organ. Then my nails started to change colour it became dark inside,. I started loosing hair plus having strange sensitive rash around my face and the neck. The rash becomes worse when there is sun.

Been going to hospitals but no doctor knew what it was. Until one day i went for chest x-ray when the pain was worse thats when a certain doctor started digging about my history he said he suspected that i had lupus. I felt good that someone understands the battle i have been through for years.

But there was a problem, he told me that in Malawi they don't test to find Lupus so he told me to find money to be tested in south Africa. I was down again knowing that it won't be easy to gather some money to send my blood sample to south Africa.

I was so stressed and i started loosing hope. I started asking help from relatives and i managed to go to the hospital where there took my blood sample to south Africa.

Now im not on any medication yet. Waiting to see the doctor who is on holiday now. I have now started to feel the worse pain in my stomach. I cant eat properly. The rash is getting worse and im so stressed and loosing hope. I spend my days crying knowing that in my country people don't know much about lupus and they don't even understand it.

I started searching for support groups near me. I couldn't find any in my country. I came across this support group/page and i decided to follow then so that maybe i can find someone to talk to and feel relieved.

Iam living in fear and i feel so lonely. Its not easy for me and i spend most of my time crying. Sometimes i google about lupus and it scares me.

Thank you so much for your time reading this. God should bless you

[whisperit]

Welcome, Jaqueline,

I'm sorry to hear how difficult things are for you but hope you'll find some kind of comfort from sharing your questions, thoughts and experiences with the community here. x

[1shz in reply to whisperit]

Yes i hope so too

[addai]

So sorry to hear your trials,over here too, in Britain it can be difficult to get a correct diagnosis. The symptoms can mimic so many other ailments. But try and be strong, stressing out makes matters so much worse. I hope you get a correct diagnosis. Stay blessed 🙏🏾

[1shz in reply to addai]

Thank you so much. This condition is really hard

[MusicalFurbaby]

Hi Jaqueline, sooo glad you found us! I’m in Australia and there’s very little support for lupus here too. It seems to take us lupies an unearthly long time to get diagnosed; unfortunately, it appears to be the norm. It took me 8 years to get diagnosed, mainly because my first symptom (vocal nodules) was extremely rare. Take heart; if I can get there, you can too! Hope the healthcare in South Africa gives you something helpful. Feel free to post here anytime. 🌈🌻✨

[1shz in reply to MusicalFurbaby]

Oh 8 years is such a long time. Its so sad but good that you got diagnosed. Thank you so much for your response. It means alot to me

[MusicalFurbaby in reply to 1shz]

Believe me, diagnosis was VERY good news for me! It was the end of a long journey of searching! It told me I wasn’t crazy and it gave (and still gives) me credibility as a patient. It was a definite relief!

[1shz in reply to MusicalFurbaby]

Getting diagnosed is indeed a great relief rather than wondering what the problem is. Its so stressful and worrisome

[baba]

Lots of good accurate information on LupusUK main website.

lupusuk.org.uk/

[1shz]

Thank you so much. N its good that you knew about lupus already, to me the disease is so strange. Happy to be your mum's name sake..

[strawberrylips]

Hi iIshz,,Yes like you I had a battle on my hands to get diagnosed, I went through hell.

When I finally was told I had Lupus, there was a sense of relief, I wasn't imagining my symptoms, they were real.

My doctor was so sorry, although he had treated me appallingly, saying I was mentally ill.

I do hope you find peace and an explanation to your health issues. It must be hard living in a country that doesn't recognise Lupus.

Best wishes jx

[1shz in reply to strawberrylips]

Its so hard and my results test are just showing that i have an auto immune disease . They said i have to go and test again after 3 months.. the process is so stressful

[ijeasike]

So sorry to hear about your struggles. Lupus can be difficult because it mimics so many illnesses. I pray you get the help you need soon. Take care and please don't give up hope. Xx

[1shz in reply to ijeasike]

Thank you so much. I wont give up

[Sashappy]

Bless you. I hope you get the help and answers you need. This is a great group for help and support along the way x