Coping with Emotional Struggles of Lupus

My hardest emotion that I deal with is frustration because my mind wants to do everything and my body simply will not. I have found cognitive behavioral talk therapy is the best option for me. I talk to my therapist via telehealth once a month so it is simple and I don't have to leave the house to go in for an appointment. She is able to give me sound advice on how to look at situations and feelings differently and also it is better coming from a licensed professional rather than a family member, friend etc. It is also good to be part of a talk group like this one because if you don't have lupus then you simply can't understand the physical and mental aspects of the disease. Something that really helped me was the spoon theory. It was written from a woman who has lupus in hopes to better explain to others what it is like emotionally dealing with the disease. You can go to youtube and type in spoon theory and there is a 11 minute video where the woman who wrote it is reading it at a lupus yearly conference. I like that much better than just reading it because it seems a lot clearer when actually listening to it. This theory is now used worldwide and taught in colleges to help describe anyone dealing with a chronic disease but particularly lupus. I hope this helps a little. Make sure to watch the video. I think that you will find it really related to you. The disease is so challenging physically and mentally and I think doctors forget how much of a mental toll it actually takes on a patient.

Look up the SPOONS POAM

When I’m down I have people I talk to and rant about it. Though I haven’t met others yet with lupus many of my friends and family members see how it effects me and have other autoimmune disorders themselves to understand the struggles of not being able to do all that you want to die to health. I find talking with my support group and talking it out help me feel empowered that I’m doing actually a lot better than I think I am with having lupus and to remember I am not a able body person so I shouldn’t compare myself to one. As long as I truly try and doing my best that’s all that matters, but it’s also ok to grieve the lack ability that you once had. Take good care of yourself, I like baths to help relax my muscles, and detox with baking soda and Epsom salts. I also ask people to help massage my back or areas that lupus is attacking. Drink lots of fluids, watch a feel good movie, draw or do other hobbies if I can, and sleep! Hope this helps, make sure to do lots of self care you deserve it 💕

I personally find it helpful to watch other people on tik tok or other social media places talk about their experiences and advocate for themselves as lupus patients. Otherwise I snuggle into bed and take care of myself by drinking water