So you’ve just been diagnosed with lupus. It’s scary. You’re unsure of what is to come. Those are all natural feelings. I would like to offer a beginners guide to lupus, nothing official, but something to help you understand what this means and what to do next.
If you are unsure of what lupus is, a quick Cliffs Note rundown. Lupus is a chronic (long term) disease that can cause inflammation and pain in any part of your body. It is an autoimmune disease, which means that your immune system – the body system that usually fights infections – attacks healthy tissue instead. Lupus is often referred to as a mystery illness, but our knowledge of it has grown in recent years. The prognosis of lupus is better today than ever before. With close follow-up and treatment, 80-90% of people with lupus can expect to live a normal life span.
Does that mean that your life will be normal? Far from it. You can still live a fairly normal life as long as you monitor your lupus, are aware of your symptoms and take precautions in your day to day life.
What should you do next?
The following tips are not protocol and you can adjust to your own life. These are just tips I found helpful or which I had done when first diagnosed.
First I suggest building a support group. Let the people closest to you know what is going on in your life. Having support will be important.
Examine your lifestyle and think if you have any habits that could use some adjusting. Smoking, drinking and staying up late are all contributors to negatively affecting your health.
Physical fitness is hard to keep up with a schedule thanks to the unpredictability of lupus. Some days I used to be happy just being able to get up to go to the bathroom on my own. So I know I for myself I used to roll my eyes when hearing “maybe you can try working out/yoga/exercise/meditation/etc”. Exercise when you have a sometime debilitating illness can just mean working on lifting your arms or legs until you can get up and do more. Don’t over exert yourself. I’m the girl who can’t walk more than half an hour before I’m done so I’m not going to say go jog every day. Just try to be as active as possible as often as you can.
When you have doctors appointments, bring a notepad or use the notes feature in your phone. I can’t speak for everyone else, but my brain fog kicks in and I will forget everything a doctor told me soon as I get home! So now when I go to appointments I write notes as the doctors are talking. If you are worried they will think it rude, trust me, they won’t. I have learned to go into appointments and let them know I will be taking notes if they don’t mind. And I have never had one say not to do it.
I know I had a huge flare up and gave up. It lead me on a downward spiral that took me some years to recover from. Never give up.
They say Lupus warriors for a reason. Because we have to fight harder and fight to be here.
The road will be long, there will be speed bumps and frustrations but there will also be good days worth living for.
Rosadela Durruthy is founder of She’s Got Lupus, a non profit organization aimed to improve the lives of those living with chronic illnesses by advocating for mental health, healthy living and raising awareness.