Updated: Jun 14
Welcome back to our series "Letters to my younger self".
If you could, what would you tell a younger you? What advice would you give? What tips could a younger you use to deal with the struggles you know are coming?
In this series, RARE Youth Revolution are reaching to some of the slightly older members of our community who know what it is like to grow up with a rare disease.
By writing letters to their younger selves, we hope that they can offer some advice and guidance that benefits all young people with rare diseases.
This entry comes from Shivani, who is impacted by lupus.
This is Shivani's LETTER TO MY YOUNGER SELF!
Dear younger self,
Your life turned upside down in just one night. Yesterday, you were very healthy, young and active. And today, you have been diagnosed with a chronic illness that you have never heard of and you have been told to isolate yourself from everyone and forget about your life if you want to live. Just like that, your world fell apart—you could fathom what you did to make you deserve all this suffering. Let’s begin by saying you did nothing wrong. I know you are worried that you will not be able to achieve the goals you set for yourself and this made you feel embarrassed and unsuccessful. Little did you know that God diverted your path because you are meant for greater things than you ever imagined.
On 29 September 2014, you will hear three words that will change your life forever—Systemic Lupus Erythematosus (SLE). Initially, you will not even understand what lupus is and how it will affect your life. You will slowly realise that hospitals, doctors, medicines, multiple reports etc. are all part of your life now. You will spend hours surfing the internet trying to find answers to treat your symptoms like rashes, weight gain, hair loss, joint pain and so much more. You will try so hard not to let lupus affect your life, but sadly, it will. You will have to suppress your overactive immune system, which will make you more prone to infections. Your body will be so weak; you will find it difficult to get out of bed, to bathe or to feed yourself. Sadly, these are just the physical impact of lupus. The mental impact will be much more intense. You will be isolated, stressed, and anxious all the time. When your ability to do routine activities will be impacted, you will go through a phase of self-doubt, and unworthiness and feel like a burden.
The academic course that you chose so passionately, after trying for more than a year, you eventually have to drop because your body can’t handle the stress of it. But you are not the one to give up—you will end up taking multiple different courses, and succeed at it. After four years of battling lupus, you will be in remission—you will think of the past four years as a nightmare and try to forget about it. You will start feeling healthy, happy and active again. You will reclaim your life and try so hard to compensate for the past four years. You will get yourself a job that you love and you are happy doing it.
Little did you know that your happiness would not even last a year. In November 2018, you will end up with the worst flare of your life, which will put you back where you started four years ago. You will lose your job, your healthy body and yourself. The hospitalisation, medicines, injection, weight gain, hair loss and much more all would come back again. But, these were not the problems, as you already have been through all that. The real trouble will be not wanting to fight this time, as you will lose all hope and won’t see any point to go through all that pain again and get better, only to end up where you began again. The isolation will put you through loneliness, anxiety and depression again. Thankfully, you have your family to support you through that phrase and remind you that you are much stronger than what you are facing. They will encourage you to fight through and reclaim your life once again.
After fighting for almost four years, you will start to feel a little better—you will try to have a normal life again. Unfortunately, you have been fighting chronic illness for so long that you do not remember what normal feels like. You will feel like you are lacking in every field of your life. Your career suffered, and you do not have the job that you wanted. You do not have colleagues, friends, relationships or social life.
But guess what? You have learned to love yourself. You might be alone, but you no longer feel lonely.You decided to put all your pain and suffering to good use and started an Instagram account (@lupus.care) to support other people in their suffering. You will feel proud, happy and content when your knowledge and experience help spread awareness and help other people fight their illness. You will realise that God forced you on this path because he knew you would come out stronger and better than ever before. He intended your strength to give hope to other people suffering.
You have been through lots of difficulties in the past eight years, but your resilience would always win against any illness. Lastly, you will relive all those moments again while writing this letter and you will be sad for a while. But after that, you will be so proud of your journey.
Shivani (28 years old you)