When I was first diagnosed with Lupus, I was furious. Enraged. Practically foaming at the mouth at how unfair it all was. I’d had health problem after health problem since I was a baby and now this? It wasn’t fair! Why couldn’t I catch a break?
My more religious family members came flocking around me to reassure me that there was hope- all I had to do was pray or atone, be a better person, have more faith, get anointed or exorcised or whatever. They meant well, but they treated me like I’d just had a magic curse slapped on me. And it didn’t take long at all for me to start feeling helpless too. I felt like I was being punished, but for the life of me I couldn’t work out what I had done that was so wrong to warrant a life-long, life-threatening sentence like this.
I combed over ever memory of my life to try and find the trigger that had caused my Lupus. My mother asked every doctor she could get her hands on what might have caused it. No one else in our family had Lupus – why did I? My grandmother developed scleroderma in her 80’s- did that have something to do with it? Was it my diet growing up? The neighborhood I’d been raised in? My family because detectives trying to solve the mystery of me.
I spent a lot of time alternating between feeling sorry for myself and feeling angry at my “curse”. I let doctor’s appointments slide, pushed myself to act “normally” and made myself sick more than once. I felt like I was rebelling against a fate that had been dumped on me. I snapped at my friends and family, angry at them also for being “healthy” while I was a defect. Years went by and eventually, I got tired of being angry and pitying myself.
Maybe it was building up over time, maybe the idea just popped up in my head, but at some point I decided to stop feeling like a victim. I decided that I was going to have the best life I could, no matter what. I stopped caring about what might have caused my Lupus. I stopped praying to be “normal” for just one day. I stopped thinking that I had been cursed by God. I focused all my emotions on deciding what I wanted to do next- enjoy myself.
It took time, but eventually I noticed that people stopped treating me like a plague. They didn’t look at me with pity anymore. More and more, my family would exclaim how great I looked as I would babble on about this project I was working on or that exhibit I had seen. They stopped pitying me, because I had stopped pitying me.
I also began to notice how different my life had become in comparison to my friends. While they were working 8-10 hours a day, living off Ramen noodles and walking around with bags under their eyes, I was trading design services for holistic treatments and trying therapies that none of us could ever afford. I was going to farmer’s markets for mushrooms and fresh spinach. I had the time to practice art and work on learning HTML and CSS programming and began making websites for people. I had time to read, to sleep, to think, to enjoy life while they were rushing to establish themselves in society, to make the rent, to get a promotion, to get a bigger, better apartment. I was able to move at a slower, more relaxed pace. I could appreciate things more.
I stopped envying them. “Normal” didn’t look so cool anymore.
And while I’d love to have a cure for Lupus tomorrow, I don’t feel like a defect, a burden. I can take very good care of myself. I know that I’m a hard worker- especially if I have a boss smart enough to let me work at the pace that’s best for me. I live a normal life- for me. And, in the end, that’s all I’m concerned about.
I’m not perfect- I have my panicky moments. There are days I stay in bed and cry because my feet hurt too much to walk. But in the end, I made more good than sad moments in my life.
It’s completely normal to have the same anger, resentment that I had, especially if you’ve just been diagnosed with Lupus and are still sorting everything out. It will be completely overwhelming. You will feel alone. You will feel helpless. You will think “Why me? What did I do?”
One thing you can do is use a journal to dump all your emotions into. You can rip the pages, stab them with your pen, smear paint on them, write every angry curse word you ever heard. Burn it when you’re ready to focus on moving to the next step- to let go of that anger. Feeling like a victim doesn’t help you. Feeling helpless only makes other people treat you like you’re hopeless. Lupus is something you can live with, it’s something you can work with, it’s something you will survive.
Turn those I can’t’s and I’m not’s into I can’s with a few of these ideas:
- Wording is everything. If you keep writing I can’t, I can’t, I can’t…then you are burning that into the deepest levels of your mind. Try writing I feel like I can’t instead- or even better, write I know I can, but I’m tired/scared/not sure how to start. Put your journal away for a few hours to a day and then go back and try to think of small ways you can do something. For example, if you used to run 5 miles a day, try just walking the 5 miles. Or shoot for 5 miles a week.
- Focus on the pros. Yeah, I know that sounds impossible, but try anyway. I found that having Lupus made me better able to be compassionate for other people with illnesses. I’m also now the go-to girl among my family when someone needs advice about government programs or health insurance. If you can’t work your job anymore, try to see it as an opportunity to try something that you’ve always wanted to try, if that’s a completely new career or starting your own.
- Find support. I personally felt better once I took religion out of the picture, but if you get your strength from a religious community, go for it. Try joining a support group or even starting a group. A word about this- it’s not going to be helpful if you use a support group to have your own pity party every week. Always ask yourself – What can I do about it? Meetup.com is a great place to start a real-world group, while Ning.com can be a great place to start an online group.
The WillPower Engine isn’t geared toward people with chronic illness, but it has a ton of great articles about how to re-wire your thinking into more positive, constructive thought-patterns. Traditional therapy can be another venue you can try.
Change isn’t a dirty word. Lupus will change your life, but not all those changes will have to be bad. One of my favorite personal quotes is from Paradise Lost.
“The mind is its own place, and can a heaven of hell, a hell of heaven make”.
If you allow yourself to be flexible and be open to living your life in ways that you hadn’t thought of, you’ll find treatments, food, and friends that work for what you need. If you don’t think of yourself as a victim, then others won’t. If you don’t feel sorry for yourself all the time, nobody else will feel like they need to. You can find new ways to enjoy old hobbies, new ways to deal with situations. Change is an adventure- if you choose to think of it that way.