My name is Maryse Hendi and I live in Calgary, AB. In 2012, at age 10, I was diagnosed with lupus. Lupus is a disease in which the immune system becomes hyperactive and attacks healthy tissue, joints, and organs in the body.

On May 1st, I celebrated a milestone in my lupus journey: my 10 year diagnosis anniversary. Today, I want to share with you 10 things that I have learned over these past 10 years with lupus:

1. Lupus is a disease of a thousand faces
Lupus comes with an array of strange symptoms, and I learned that no two people diagnosed with lupus will present the same.

2. Few people have ever heard of lupus.

Over these past 10 years, I have had to tell many people that I have lupus. The most common response that I am met with is confusion. Unfortunately, this shows that we still have a very long way to go in terms of lupus awareness. I strongly believe that awareness creates kindness, which is why we should be striving for widespread lupus awareness in our world.

3. It’s okay to ask for help
A lot of people have a complicated relationship with asking for help. We feel like we should be able to do it all ourselves. Asking for help can make us feel vulnerable, like an admission of defeat, and this feeling is magnified when we’re sick. Over these past 10 years, I learned that there is nothing wrong with asking for help, and that no one, sick or not, can do it all themselves.

4. Unapologetically advocate for yourself

I have learned to always trust my body. You know your body best and never let anyone convince you otherwise. If something feels out of the ordinary for you, don’t stop standing up for yourself until you are taken seriously. This could save your life!

5. Prioritize mental health
I have learned that stress impacts people with lupus differently than others. Stress can cause lupus to flare up, so it is incredibly important to learn to manage stress in a healthy way. Unfortunately, due to the intensity of lupus, things such as anxiety, depression, and burnout are very common. If you’re feeling burnt out, it is so important to bring this up with your healthcare provider and seek support. Don’t be ashamed to reach out. Remember, it’s okay to not be okay.

6. Know your limits and set boundaries accordingly

With lupus, I’ve come to learn that if I over-exert myself, it’s likely I will go into a flare up the next day or within a few hours. This is the case for most people with lupus. It is so important to know your limits, i.e. “If I am active for ____ amount of time, I will flare up” and let your friends and family know this fact. When planning outings, I think it’s important to be firm with your boundaries and not let people convince you to go for longer than your limit. Setting boundaries may feel difficult at first, and you may cave in a few times at first due to social pressure, but it is extremely important for your health to respect what your body can handle.

7. Having a good, trusting relationship with your healthcare team is important. Don’t feel afraid or embarrassed to get a second opinion or to move to another doctor if the trust is not there or if the fit is not right.

8. Medications Are Not ‘One Size Fits All’
Something that worked spectacularly for most people could have no effect on you or vice versa. It takes time to find the right medications and dosages that will work for you.

9. Don’t Be Afraid to Use Things to Make Life Easier
One of the most difficult things I learned was to stop letting others’ perceptions of me interfere with my life. I realized that if I let my fear of others’ judgment stop me from using the things that I need to make life easier, then I would never be able to thrive. If you would benefit from using splints, braces, mobility aids, accommodations at school, etc., don’t let people’s naïve judgments stop you. 

10. Be Kind to Yourself
At times, lupus feels like a disconnect between the mind and body: the mind would like to do one thing while the body is fighting against it every step of the way. It can be difficult to not hate your body for putting you through this. It can be very difficult to not talk down to yourself when you can’t do the same things as your peers. But over the past 10 years, I learned that I deserve to give myself compassion and kindness. I am fighting a battle every day that no one can see. I have survived things others my age could never imagine. I am strong, I am resilient, I am powerful.  

In honour of Lupus Awareness Month, I have teamed up with Cassie + Friend’s to fundraise for the Alberta Children’s Hospital Pediatric Rheumatology Clinic to help fund pediatric lupus research and support programs. Pediatric lupus is not spoken about or researched enough which is detrimental to the care that pediatric lupus patients receive, together we can help change this. To make a donation towards my $2000 fundraising goal, please click here. Thank you for your support and helping #MakeLupusVisible.

To learn more about lupus visit the Cassie + Friends Lupus Resource page or visit our friends at lupuscanada.org