themighty logo

10 Things I Wish My Loved Ones Understood About My Life With Lupus


I was diagnosed with lupus a month before my 21st birthday. I had to leave college in South Carolina for my bed in New York. Through every symptom and dramatic life change, the most challenging thing I face each day is frustration. Often, my loved ones may not understand what I’m going through, and it is not an easy thing to explain. Here are 10 things I wish they knew:

1. I know I look fine, but I’m not. One of the most frustrating parts about my illness is that I don’t look as sick as I am!

2. I’m proud of myself for getting out of bed today. I know the average person might be proud for something more than leaving bed, but I am not average.

3. I devote a lot of energy to holding back tears. I want to cry when it hurts and when you don’t understand, but I don’t want to seem weak.

4. Today isn’t the same as yesterday. I may have been able to do a lot more yesterday because I didn’t feel as sick as I do today. Every day is different.

5. I’m never pain-free. Although it can be easy to assume I must feel great because I left bed, I don’t remember the last time I was a zero on the pain scale.

6. I feel guilty a lot. It hurts today and I want to stay in bed, but I think you would be mad if I canceled our plans.

7. I envy you. When I have the courage to cancel our plans, and you can still continue, I wish I had your energy.

8. You’re my reason to keep fighting. Battling this is exhausting, painful and sometimes renders me hopeless. But knowing I have you and your love restores my hope and keeps me afloat.

9. It’s OK to ask questions. If you’re wondering if today was a hard day for me, ask! If you want to know more about my medication, ask! Ask how you can help! Let’s have a conversation.

10. I’m still me. This illness changed so much about my life and interrupted a lot of plans, but my personality and love for life remains intact! I promise.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.