9 Tips For Surviving Life With Lupus

(1) Hold space for yourself to feel angry. Life has thrown you this huge curve ball, and suddenly your whole life has changed. It’s ok to be angry about this! Allow yourself to feel that anger and then release it. Bottom line, don’t judge yourself for how you are feeling, don’t suppress those emotions; let them come, and then let them go.

(2) When you find yourself dwelling in a negative space, list off some things that you are grateful for. I have tried to make a practice of doing this first thing every morning. I usually wake up tired, in a lot of pain, and cranky, and that just is what it is. I acknowledge those feelings of pain and frustration, but then I remind myself of the things I have to be thankful for.

(3) Keep a journal. This is great for a number of reasons, I actually keep a few different types of journals; some related to my lupus, some related to my emotional/spiritual well being, some for work. For the newly diagnosed, I highly recommend getting some sort of journal or planner for tracking symptoms, weather conditions, the lunar cycle, etc., to look for patterns. This is so helpful when talking to doctors about specific symptoms and how long they lasted. It’s also very helpful when trying to identify triggers, or situations that cause you to flare. Another great idea is a food diary. I have noticed that my joints swell more when I eat grains and dairy; this is a trigger for me so I now know to avoid it! Keeping a personal journal or “diary” can be helpful when it comes to getting your emotions out. There are also some great phone apps to help with, at least, the first two types of ‘tracking’.

(4) Be actively involved in all thing related to your health. Know your disease, know your symptoms, be informed. I am constantly reading and researching what’s new in the world of lupus, what alternative or complementary treatment options there are, etc. Be informed! Nobody knows what’s happening in your body better than you do, and at the end of the day – you are the one who has to live this life in that body, don’t you want to be actively involved and informed?

(5) Don’t be afraid to say ‘no’. I tell people all the time that ‘no’ is a complete sentence. Whether it’s a dinner invitation or someone asking you to stay late at work when you know you are physically not up to it – it is perfectly acceptable to say no.

(6) Find your tribe. Whether it’s close friends or family members, or both, find the people in your life who are going to uplift you and support you. For me, it is my family and a few close friends, they are the people I can tell anything to, the people who pick me up off the floor when I can’t stand. I know I can call them anytime and they will have my back, and that alone is comforting.

(7) Ask for help when you need it. If you’re anything like me, asking for help is not easy at all. Whether it’s asking for help cleaning your house, cooking, or needing someone to drive you to a doctor’s appointment, if you need help…ASK!

(8) Understand that not everyone is going to be sympathetic to your struggle. There are people who aren’t going to respond to your story the way you think they should, that’s just the reality of life. You have to have the strength to move on without letting their reactions bring you down. Their opinions do not change the validity of what you’re going through, and to give them energy is to take energy away from this battle you are fighting.

(9) Have patience with those who just don’t understand. Lupus, specifically, is not a very well known disease, and there are people who just won’t understand what lupus is and what it means for your life. It’s not out of malice that they ask questions, but out of genuine ignorance.

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