You have Lupus. Lupus doesn’t have you. – How I found out I have lupus

It was the summer holidays 2006. I was in my bedroom straightening my hair as I had plans to go out with friends. I had the TV on  in the background, listening To music on channel AKA. A song I liked came on and I started to prance about as though I was in the video. As I was enjoying the music and turning my bedroom into my personal dance studio. I started to Curl my fringe. As I did so I managed to press the straightener against my eyebrow. I felt the heat of both plates press against the area and heard hairs burn before I could pull it away.

Yes I know clumsy!!! That is me in a nutshell, to be honest  looking back I think of it as less clumsy and more of a blessing in disguise.

I didn’t think anything of it. I Had slightly burnt myself what’s new?! . As I said I’m a clumsy person so an small injury didn’t worry me. Also At that age I wasn’t to fussed about small scars/spots or any marks on my face. It was a little sore, red in areas and a part of my skin had split but wasn’t bleeding. Since It wasn’t bleeding and hadn’t produced a blister I was happy enough to put Savlon on it and continue my weekend. Thinking it would scab over and heal.

How wrong could I have been! The outcome was nowhere near what I thought I would be told. 

After about 1 week it still had not healed. The hairs on my eyebrow had started to fall out and if I was to rub my eyebrow or even itch the area the skin would split. To be honest it was so bad that if I raised my eyebrow there was a chance I could split skin. At this point I had started to kind of freak out on the inside. Desperately hoping that the hairs would start to grow back and my skin would stop splitting. I had also noticed that on my right eyebrow ( the one that had been burnt)  between the eyebrow bone and the skin there is meant to be a thin layer of fat that sits between the two. This layer of fat had moved into my eyelid. Making it look like I have a lazy eye.

At that point I had already spoken to my mum earlier in the week and as it hadn’t healed she booked an appointment with my gp.

The following week we went to the gp. Who had no idea why my eyebrow wasn’t  healing. So she decided to book me an hospital appointment for that afternoon.

At that point My level of worry hadn’t increased. I was slightly annoyed that the doctor couldn’t do anything for me and barely gave me any information as to why i wasn’t healing. It’s honestly one of the most frustrating feeling when your gp doesn’t have a clue what’s wrong with you and looks at you like you are a foreign object.

Nevertheless with no information we made our way to the hospital. At the hospital I was seen by a female doctor who examined my eyebrow and then turned to both my mother and I and uttered words I honestly wasn’t ready to hear.  Words that started a rotation of worry and fear in my head.
She told me there was a 50% chance I could have lupus and she would need to do a biopsy on my eyebrow in order to determine if her suspicions were correct. If she was correct then it would also determine which type I have.

The words Lupus and Biopsy rang in my head. I can’t explain how fast my heart started to race, how much I just wanted to walk out of the hospital and pretend that it wasn’t happening. The thought of potentially having lupus knowing  my Nan suffers with it to the point it effects her everyday life, the fact that the  disease is on my face and on top of that the thought of cutting my face to remove skin was too much.

I remember looking at my mum and her being the wonderful woman that she is. She squeezed my hand and smiled trying to reassure me as the doctor continued talking. As reassuring as her smiles normally are at that moment ‘Lupus’ and ‘Biopsy’ were winning. It was like the two words were holding hand and skipping in side my head while glaring at me. I wanted tell my mum and the doctor I was going to the toilet and run straight towards the exit.

How do you react when you are told you might have disease? And one that is so visible on your face? 

To tell you the truth I don’t recall what the doctor had been saying to my mum. but I came back to earth when she pushed back her chair and asked me if it was ok to do the biopsy right there and then.

Now I can’t stand needles and the thought of a needle going into my eyebrow was not appealing in the slightest. In the back of my head I knew my mum wouldn’t have allowed me to leave without the procedure being done. I knew if I didn’t get the biopsy out of the way then I was never going to know if I had lupus or not. Not knowing would not only have potentially damaged my health but would have also driven me insane with worry.

I had the biopsy which was over in a few minutes. She numbed the area by injecting local anaesthetic, then sliced my eyebrow in order extract skin for testing and then stitched me up. I honestly don’t know what I was worried about. It was quick, easy and painless. I was then sent for a bloods test. More needles. It was my lucky day!. After they received their 5 tubes of blood I went home.

The two weeks that followed felt like 4 months. My nerves are on edge. I tried my hardest not to google images of lupus as the Internet shows you the extreme cases and that would have freeked me out. I managed to avoid google images and learnt the basics on what lupus is.

Do know how hard it is not to google images of  a disease you may?  It literally took everything in me not to sit for hours staring at images. I would recommend if you are waiting for tests results for a condition you potentilly have do not google images!

I returned to the hospital for the results. As eager as I was to find out the results I was scared at the thought of having lupus. The thought of being branded with a butterfly/Wolf mark literally made me want to cry and hide myself away in my room. My grandmother had Lupus and I knew of some of the things she was going through as well as looking online. All of it was rotating in my head.

The doctors told me I have discoid lupus Erythematosus. My heart dropped. All I could think is I have a disease, I feel disgusting. I wanted the doctor to say ‘ only joking’ as some kind of cruel joke.  She explained that it’s not contagious. It hadn’t manifested out of thin air. It’s been living dormant inside me and by me burning myself I made it active. She then went onto telling me what I already knew, that  it’s something I will have to live with for the rest of my life. ‘ unfortunately there isn’t a cure’. I think hearing her verbally confirm it although I already knew set me off.

The flood gates opened.

I felt betrayed by my body. It was like I had been harbouring a fugitive who had been hiding waiting to pounce and dominate the world.

My world.

And she succeeded!.

My world as I saw it had crumbled. I was now the girl with the disease on her face.

The doctor gave me a treatment of  tablets (I  can’t remember the name) and a steroid cream (again I can’t remember the name).

The journey home was the longest journey ever. I just wanted to get home, I didn’t want anyone to look at me . I just wanted curl up in bed and cry. After going to the pharmacy  and making my way home. I remember sitting in my room asking myself how I was going to break the news to my boyfriend at the time. I was convinced he was going to break up with me and no male would ever find me attractive. I picked up the tablets and cream. I began to read the instructions and question if this was going to be me for the rest of my life?!. If I was going to get the butterfly mark?. The flood gates opened once more.

The answer is YES it sure is.. Well minus the cream and tablets. I’ve been managing my flares myself for the past 7 years. It’s something I choose to do because of experience during the first 3 years of my lupus being active. Taking the tablets and creams I was being prescribed  only made things worse.

It’s not something that I would recommend as everybody reacts differently. Many people result in their symptoms getting worse once they stop taking the treatment prescribed

10 years after being diagnosed and my fear of lupus is still there but nowhere near how I feared it before. Faith, Love, positivity and having knowledge about lupus makes having Lupus easier.

If You have been diagnosed with an Chronic illness or any illness for that matter and you want someone to talk  about anything  feel free to email me Raspberriesandbrownies@gmail.com. I won’t be able to take it away but I am here for support 😊

Jade X

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4 thoughts on “You have Lupus. Lupus doesn’t have you. – How I found out I have lupus

    • raspberries & brownies says:

      Sorry been meaning to reply. As the years go by the emotions start to fade away. For me trying to get to grips with all the flares and not talking about it to anyone made it Harder emotionally. I’m so glad You have a platform to express yourself. It will really help X

      Like

  1. fizzstah says:

    Thanks for sharing your story. For me they suspected I had rheumatoid arthritis and I did not resist the urge to Google Images 😣. I was convinced I would end up with mangled hands and fingers going in different directions like the pictures!

    Like

    • raspberries & brownies says:

      Thank you lovely, the guessing and waiting game is the worst. I think once you know for definite it’s easier to deal don’t get me wrong the journey is not easy at all but our imaginations can definitely get the better of us. I wish you the best on your Journey. πŸ’œ

      Like

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