A Letter To My Younger Self | Nay's Story

Recently I received an email from another chronic illness warrior Nay who had heard about what we do here at skindeeply. Nay suffers from the autoimmune disease Lupus. She explained how she was a literature teacher back in Brazil so self expression and writing in her own language was her forté but she has found it difficult to properly express herself through English which has impacted her self-esteem. As we emailed back and forth she told me about a letter she wrote to her younger self which was published on a Brazilian blog. Nay had previously translated her article from Portuguese for an English class which I then provided simple editing to for a beautifully written and heartfelt piece which you can have a read of below.

---

Letter to me: If you could give any advice to you as a teenager, what would you say?

Dear 15 year old me,

I would like to start off by saying these two things: wear more sunscreen and keep on doing what you are doing, our future is beautiful!

In our future we will develop an autoimmune disease, Lupus, and in our case the sun is our

biggest enemy. We will get some marks along our body and face. We will be insecure time and time again and ask ourself questions like “how can someone love us?”. For quite some time we will wake up before a date and apply makeup to hide the little spots on our face.

But take it easy, there will come a time that you will insist on going on a first date without makeup so he can know immediately who you are and you won’t prolong hiding those insecurities for another second.

You are beautiful at age 34 and that is not even your best quality, you cook very well too and you do this to take care of your friends, it will be your special way to say that you love them the most. You will leave home at age 15.

Adry is the person who will be there for you most of time, you guys will live together in a very special house. You will laugh many times and cry other times, share relationship problems, dreams and disappointments. He will be your family so please, be patient with him and remember that you are not always right.

You will be fine.

So many others friends will come along to stay in your life and they will be in part

responsible for the person you’re beginning to build. Ah! accept Pris' invitation to go to the cinema, after the first "yes" you will never know how to say "no" and it will be so good (I have so many names for you).

You will meet Lázaro at work and you’ll live together many times in various places. One day you will be walking the streets of London like home. We did everything that we wanted to do, we had no regrets. And pay attention to this, he will leave us sooner than you can imagine.

I’m sorry but I need to say he won’t stay in our life for long, or in this world. Your last

words to him will be “we’re family, love you”.

I can only conclude that you are special, this can be proven by how many good people you have beside you.

Relationships for us will be a disaster for a while. I won’t say names but you’ll have a relationship in which you will fall in love quickly and it will end badly. You will have too much pain and you’ll need leave everything behind you: the house, the job, our family and friends. I wish I could be there to help you handle these dark times, I need you be strong because this suffering will be fundamental in assisting you to winning the world.

You will suffer but you will develop the ability to transform pain into a trampoline (which is something that I love about us) you won’t allow yourself to suffer for too long and will use the pain as a pretext to get to know the world and then you’ll meet many interesting people.

I promise everything will be fine.

I’m writing this now after we have travelled to more than 15 countries. Besides being a Master of Literature, we now speak Spanish, English (and we are just starting to learn Hebrew and Italian).

We will be so happy but we will have to go through these bad moments.

If you allow me to bestow one more piece of advice I would say to share a little more of how you feel, We have good people around us that love us.

At this point we also miss our old friends very much.

I'll finish this letter by telling you a little about where we are at now:

We are now in London and we have big plans! In only two years we have already learned 2 new languages and are studying 2 more, you’ve been in more countries than you can count on your fingers. Nepal, India, Thailand, Vietnam, Cambodia and Myanmar are your wish. Brazil? we’ll start planning our next trip. We also want learn to swim, drive and play the ukulele. At 34 we still have so much time.

We were hospitalized for 7 days and it was very serious. For sure you’ll think back and miss the time that you were only suffering for a guy. But again, you’ll be better than before. Shit happens all the time and it happens to everybody but we’re survivors, don’t forget that.

We needed to go too far from ourself and then re-create ourself and then have an honest meeting with ourself; Life doesn’t workout like we planned and it plays with us all the time.

Please remember that you are so strong and brave, you’ll have a beautiful adolescence and I thank you for your courage, everything that I am and what I am most proud of about us I owe to you and your ability to challenge the world.

I admire you so much and I am fucking grateful.

With love, Nay.

---

I would like to give the lovely Nay a huge thank you for sharing her story here on skindeeply, it was a pleasure to craft this post with you and to everyone reading I hope you enjoyed it as much as I did. Feel free to give it a share, sharing our stories unites us.

If you suffer from a chronic illness or condition and would like to share your story here don't hesitate to get in touch via email (contactskindeeply@gmail.com) on my instagram (@marzi_murphy) or through the contact page right here on the site.

#lupuswarrior #lupus #autoimmune #chronicillness #strength

"I have Lupus it does NOT HAVE ME"| Nefertiti's Story

As of recently I have been reaching out to others with chronic conditions that have altered their appearance and/or transformed their lives in various ways. The intention of this is to create an open dialogue about these conditions, some of which are often overlooked or forgotten about. Repeatedly people such as myself and millions of others suffering from these underdiscussed illnesses can feel isolated -which is what I am aiming to to change. By reaching out and sharing the stories of people suffering from chronic conditions we can raise awareness, help others who have just been diagnosed see how someone with the same conditon has coped all the while creating a possitive space and supportive network.

I came across the Instagram account neffnjoilife at the beginning of February. She regularly posts some of the most beautiful inspirtational and strength quotes I have seen. She also posts pictures showing her scars; a result of her fight and survival with Lupus. I had a feeling that Nefertiti's story would be one of courage and strength through her illness so I reached out to her and requested that she would share her story here on Skindeeply. She so graciously agreed (thank you!) . I respoded by sending a questionaire of sorts (almost akin to an online interview). Below is the dialogue of said "interview":

---

Nefertiti's Story | Skindeeply

Tell us about yourself! What is your story? What do you? What do you enjoy? What defines your badass self?

"I am an amazing brave strong woman who’s been through hell and back dealing with Lupus since 1996. I was diagnosed while pregnant with my first child and a senior in college at Grambling State University. I was determined that nothing was going to stop me from graduating with my BS in Accounting. With the support of my mother we both decided that we’ll get through this together. My motto is: Yes, I may have Lupus but Lupus doesn’t have me! I live my life and deal with Lupus as it comes."

What is the name of your condition? How long you have had it? What does it do to your body physically? How did you feel when you first got it? and how has it impacted your life?

"I was diagnosed with Discoid Lupus (totally skin related only) in 1996. No issues other than fatigue from prolonged sun exposure and a few scars on my face, nothing too serious at that time.

I ended up having my first child, Christin, in September of 1996. I was advised not to have anymore children because of having Lupus but we (myself and fiancée at the time) wanted one more. We ended up getting married in 1999 and I had my second son Aris in June 2000. He was born without any issues as well.

It wasn’t until 2010 that my health took a turn for the worst! The left side of my face swelled and I didn’t know why so I went to ER and I was told the Lupus has made its way internally therefore I was diagnosed with SLE that had started to attack my kidneys which led to sepsis (a severe kidney infection). During this period I started to feel very bad; always in constant pain, very fatigued and just awful."

How have you "wrestled the beast" that is Lupus? What steps did you take to cope with and manage your condition?

"I managed to cope by continuing to keep my faith. My faith has kept me strong mentally. I made a conscious decision to fight for my life.

I attempted to change my diet to preserve the minimal kidney function I had left. I was in horrible shape and started to lose weight. I went from a size 6 to 0 and I lost all of my hair which was a major blow to my self esteem. Eventually I researched hair replacement options and moved forward. I was a working mother in the corporate workforce so I had to “woman up” and handle whatever was thrown my way because life still goes on! I refused to be defeated and have pity parties that’s not my style I try not to even give Lupus attention or power over my life! But over time I lost the battle and had to undergo dialysis in April 2016. I was called by my doctors to get to the ER immediately to start dialysis. This was the beginning of the REAL fight.

Dialysis is no joke. It’s the process of filtering all the toxins out of the blood and then putting the blood back in the body. This process lasted 4 hours each day. I had to have it done Mondays, Wednesdays and Fridays. I really couldn’t stand this but it was my lifeline without it I would’ve died. However, I was placed on the transplant list in February 2018 and lo and behold I received a kidney in June 2018! This was the best news ever because the normal wait time is 7-9 years for California. I only waited 2 years. Praise God!"

Has having Lupus affected your self-esteem? What ways have you been learning to love and look after your body?

"After receiving the kidney transplant my self esteem was even better! I’ve always been a positive happy person who loved to laugh but this made me realize there’s purpose to my life.

Healing is my focus. I’m in better shape and eating cleaner. I’ve gained most of my weight back, I’m exercising, walking 45 minutes 3 times a week - Life is good! I’ve been through the ringer but I’m still here! My spirit still shines and I’m truly happy regardless of what I lost."

How well do you feel the media and popular brands represent people who live with your condition day to day? Do you feel there is enough representation of chronic conditions or Lupus in the media?

"Lupus Awareness has come a very long way. In 1996 Lupus was unheard of but over time the word started getting out! Lupus Foundation of America, LupusLA, Alliance for Lupus Research and The Howse Lupus Foundation and others have all made great strides in the Lupus community. I’ve benefited from all their support. We do need more media attention! I would like for Lupus Awareness to be on the level as Breast Cancer. We NEED A CURE!"

Finally what advice would you like others with your condition to know? and what information do you have for people who don't understand your condition?

"I would like others to know that you CAN live a semi-normal life with Lupus! It’s a mental game and you must have a strong mental fortitude to handle it. Take the meds, try holistic options,  eat cleaner, exercise and LIVE anyway! You must remain strong and never give up! "

"I’m worth the fight! I have Lupus it DOES NOT HAVE ME! " 

---

Huge thank you to Nefertiti for giving me the pleasure of sharing her story. You can follow her on instagram @neffnjoilife. To anyone out there beginning or in the midst of their own battle with Lupus I hope you found this post helpful. Share this post so we can reach others with Lupus and educate those without it. I have learned so much about Lupus from this story. I am sending love and positive thoughts to all the #LupusWarrior and #LupusSurvivor people out there.

For more inspring stories, life stuff, advice and more subscribe to skindeeply and follow @marzi_murphy on Instragram (I always put up when I have released a new post).

If you have a chronic condition or illness and would like to share your story you can get in touch on the contact page or by email (contactskindeeply@gmail.com).

#Lupus #LupusAwareness #ChronicIllness #Survivor #Bravey #Strength