About me
What is your invisible illness & when were you diagnosed?
I was diagnosed with Rheumatoid Arthritis at the age of 18, 2014. Rheumatoid arthritis is an autoimmune condition that primarily affects joints, but can also cause anemia and inflammation in other parts of the body.
How does your condition affect your day-to-day life?
My symptoms initially came on overnight. I woke up one morning and I couldn’t get dressed, do my buttons up, open the door, open a water bottle, lift up a kettle etc. If it wasn’t for my mother I wouldn’t have been able to do anything alone. After getting my condition somewhat under control with medication, nutrition and yoga, it doesn’t affect me to that extent anymore, but I have to be aware every single day how much I can do. I have to be careful not to run out of energy, or put too much pressure on specific joints because I know this will cause a flare the following day. So everyday prevention and carefulness is always on my mind.
Life changes
How has your life changed since diagnosis?
I became a much more positive person actually! My diagnosis opened up a whole new world of nutrition, mental health, body awareness for me, which I actually am truly grateful for. Yes of course, my life is also different in terms of not being able to go totally crazy with my energy or a specific sport to put too much pressure on my joints but actually mostly it has been a positive journey mentally. I have met incredible people, the community is so powerful and supportive. It made me a stronger person, more understanding. I expect less, I assume less. I treasure the little things in life more than I ever did before. The simple task of getting dressed, I am grateful for each day that I can do it myself. So all and all, it has been a journey to the discovery of my path, of the path I was truly meant to be on. To raise awareness, bring positivity and lightness to people, and support them through my yoga teaching journey.
How has corona virus affected you?
I had to stop one of my biggest passions, dancing kizomba. (Here is a quick video of me dancing) Less contact with people, less interactions, less going out.I’m a ‘people person’ so it is tough. Not seeing my family as they are in another country. It is also frustrating seeing people be so careless, but I do me and I do what’s best for me. I devoted the extra time for things I didn’t have that much time for before. My yoga, time in nature.
What has your condition taught you?
What has it not taught me? It helped me understand my body better, it allows me to tune into my body like it is simply a house for my soul. A place I need to cherish and look after, a place that doesn’t define me as a person. It has opened my eyes to empathy and understanding. Not having any assumptions in my life for myself, others, or other things. Because my condition is not something that you can just assume someone has, so in return it truly opened up my eyes that you cannot judge a book by its cover. My condition has made me more grateful, and a much much happier person. I cherish the tiny little things so much more. You got out of bed today? DAMN GIRL celebrate that! You brushed your teeth? Be grateful for being able to do it by yourself! I think it is so sad/interesting how we mostly have to hit our lowest to then start noticing those little things to be grateful for.
It has changed my perspective about myself, being more understanding, loving and kind, and it has also helped me build more meaningful friendships. Well, it did also mean I let go of a lot of friendships, but that is just because they were not the right sort of people for me anymore. Now I can truly connect, support, lean on, joke with, talk with and encourage with true, honest friendships, even if we never met in person. So, my condition taught me how to be the better version of myself, it helped me find myself and turn it around into a beautiful thing I can share with others.
My Top Tips:
- Know you are never alone! Reach out to any of us about anything. We are all here to support each other.
- Try things out. I am not saying they will cure you, but if someone recommends yoga, nutrition, CBD, or whatever else it could be. Just give it a go and see if it helps you. Give it a real go for a few months to see. Because you never know, each of us is so different.
- It is okay to not feel okay. Listen to your body and see what it needs.
- It is okay to need help, trust me, it gets better.
From me to you
Is there anything you wish people understood about your illness?
Firstly, that it can affect anyone, at any age, of any race, of any culture. There are no right or wrong people to have it. I think the most frustrating thing for me that took me a long time to relax about is peoples comments “aren’t you too young?” or “isn’t it for old people?”. Now I know it is just a pure lack of education but in the beginning it used to really frustrate me.
After that, it is more than just taking meds and joint pain. It is brain fog, hair loss, weight fluctuations, stomach problems, hormonal problems, remembering to take medication, regular blood tests, fighting for your truth, finding the right doctor, loads of pep talk, loads of research and trial and error, and a lot of pain. It is grieving our old selves, it is realising that our future might be different than we had planned. Knowing that each day is different without knowing how good or bad we will feel the following day. Nausea, headaches, depression and lack of motivation. It is having to shield ourselves more due to weaker immune systems. It affects us all in so many different ways, so no, it is not just inflamed joints.
Is there anything you would want to tell your younger self?
Inner child work is something I truly recommend doing to everyone. I first discovered it in therapy and it still helps me in my daily life. I meet with my younger self very often. What do I tell myself? Ahhhh sooo many different things. Let me give you just one snippet of a conversation/letter/message of something I say to my younger self.
“I know you think you need to always be strong. That you always need to keep a smile on your face. But know that I am here for you. You can cry. If you need a hug come and I will give you a hug. Your feelings matter too.
I know that you are in situations that no child should be in, and you have to be strong. But please don’t forget about yourself. Remember your age and go and have fun, explore different things. Don’t worry about others all the time. You are important too. You deserve to speak up. You deserve love, care, compassion. You are worthy of it all.
You think nothing can knock you down? Trust me, things will happen in your life which will knock you right down. They will shake you up so much you won’t even see it coming. But hey! Chin up little girl. You will get up, you will be even stronger. The things you are going through now are preparing you for an incredible journey. You will help so many people. You will discover your true path. You will change people’s lives. Don’t forget to treasure every step of your journey. Trust that no matter the bad, or the good, it is all part of your journey. Just trust the universe, which I know you look up to already, and know it has great plans for you. Your experiences will make you a loving, caring and giving person.
But never ever forget, you are not alone. It is okay to cry, please know this. It is okay to scream. It is okay to laugh. It is okay to express your emotions. If others don’t like it that is their problem, not yours little girl. Focus on your beautiful cup of love, and fill it up with self love first before you devote any to other.
Now smile, you have an incredible journey ahead of you ❤
From your older self, always by your side”
Are there any groups or resources that have helped you manage or live with your condition?
I tend to avoid Facebook groups, as they tend to be full of more negative outlooks on life. The Instagram community is seriously so beautiful and amazing I would recommend them for sure. My YouTube account has a few panel podcast episodes that I believe are helpful to everyone, warriors and their supporters. (Arthritis Supporters Panel, Methotrexate Panel)
Nutrition helped me a lot too, I mainly try to eat an anti-inflammatory diet but the addition of supplements like pure turmeric with black pepper, supplements, vitamins, omega fats really help me too.
Yoga has been a miracle for me. It helps to oil up our joints, keep us more mobile. It helps with stiffness and most of all helps to build flexibility and strength in our muscles which truly help in preventing joint pain as we use our muscles more.
Taken from a blog post I have written for Invisiblog.
