Living with lupus can be a rollercoaster ride, filled with ups, downs, and unexpected loop-de-loops. As someone who’s been navigating this illness for 10 years now,  I thought it was time to share some insights. Here are 15 things I wish others knew about living with lupus.

What is Lupus?

Lupus is a chronic autoimmune disease where the immune system becomes overactive and attacks healthy tissues. It can affect various parts of the body, including the skin, joints, kidneys, brain and other organs. Common symptoms include fatigue, joint pain, rash, and fevers. Living with lupus means dealing with these symptoms and managing flare-ups, where symptoms worse, and periods of remission, where symptoms improve.

Living with lupus is a really unpredictable journey. There are good days when I feel almost normal, then there are bad days when even getting out of bed feels like climbing Mount Everest. It requires constant vigilance, self-advocacy, and a good sense of humour to cope with the challenges. 

1. Sometimes I have to Say No

Saying no isn’t me being rude or antisocial; it’s me conserving my energy for the times when I can say yes without regretting it later. 

2. It is a lifelong illness

There is no cure, and I’m in it for the long haul. Lupus is kind of a clingy friend who just won’t take the hint.

3. I will have good days… and bad days

Some days I feel like I can conquer the world, and others, I feel the world has conquered me.

4. Medication sucks… like a lot

The pills, the side effects, the constant trips to the pharmacy (where I’m known on a first name basis) – none of it is my idea of a good time. In fact, my medication draw looks like a mini-pharmacy.

5. It is really expensive

From doctor visits to treatments, living with lupus is a second full-time job that doesn’t pay a cent.

6. You often have to fight for yourself

Being your own advocate is crucial. Sometimes, you have to shout to be heard, even if your voice feels small.

7. This also means you have to often fight doctors

Not all doctors understand lupus, and finding one who does is like winning the lotto.

8. Fatigue is a constant companion

It’s not just being tired, it’s a bone-deep exhaustion that no amount of sleep can cure.

9. Brain fog is real

Sometimes, my thoughts feel like they’re wading through molasses. If I forget your name, please don’t take it personally.

10. My skin hates the sun

Sun exposure can trigger flare-ups, so SPF is my best friend (when I remember), and I avoid the sun like a vampire.

11. Stress is a trigger

Stress can make my symptoms worse, so I have to find ways to relax, even if it means binge-watching “Friends”.

12. I have a love-hate relationship with exercise

Exercise can help, but it can also make things worse if I overdo it. It’s a delicate balance.

13. I am not lazy

Just because I need to rest doesn’t mean I’m lazy. My body just needs more downtime to function.

14. I might cancel plans last minute

It’s not that I don’t want to see you; it’s that my body sometimes has other plans.

15. I need support, not pity

I appreciate your support and understanding, but please don’t pity me. I’m a lot stronger than you might think.

Summary

Living with lupus is a constant challenge, but it’s also a journey of resilience and strength. By understanding these points, you can better support those of us living with this chronic illness. Remember, a little empathy goes a long way.