Sharing the Journey: Coping with Lupus’ Mental Health Impact

This series – Sharing the Journey – is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day. Mostly, we celebrate what makes the lupus community strong by sharing our journey, together.

Having a chronic disease like lupus can lead to feelings of sadness and helplessness – when feeling emotions like these, what helps lift your mood?

Battling a chronic disease daily is very hard, making it inevitable to have feelings of sadness and helplessness. We ALL have these feelings at different times in our journey. I suggest finding something you like to do to take your mind off of the Lupus Monster. I sing, play music, do my makeup, read, write a blog entry, and talk to my support system and other Lupus Warriors to help lift my mood. I also find something positive to focus on throughout my day. I share with others daily to find their rainbow, focus on it, and you will get through your raining season. If you can’t seem to find something positive to focus on, always remember, there is an opportunity for a better day in your tomorrow.   – Angel

Mental health with a disease like lupus can be so tricky. Maintaining good mental health looks different for everyone, so I think it is very important to find what works for you and what doesn’t. Having lupus can be extremely discouraging at times, especially during a flare. It is very hard not to focus on all the symptoms and bad things going on within your body and how it affects your daily life. I try and tell myself that with the next flare, I’m going to handle it better than the last, but that’s not always the case. Usually in the first few days of a flare I find myself very down and withdrawn from people. However, I keep reminding myself that I have gone through this before, I am strong, and I will survive. For me personally, my husband is a great support system, always encouraging me, but also letting me be sad about it when it’s needed and appropriate. Feeling all those emotions is okay. I also like to get outside for walks with my dog – exercise and fresh air always make me feel better. Surrounding myself with things and people I love help me remember who I am and why I am fighting this fight. – Roxi

Mental health is so important!  I know that my entire body physically suffers when I am emotionally unhealthy. The most important key to my mental health is balancing activity with rest. When my mental health takes a turn for the worse, it is usually because I am engaged in too many activities and not giving myself enough time to rest and recharge. Other times, I am focusing too much on my job and responsibilities and not giving myself relaxed, social time.  I normally evaluate my commitments and energy level when I am feeling sad and depressed, and then I try to vary my schedule, the people I interact with, and the things I do each day. – Becca

When I feel helpless or depressed, I talk to my family and friends and that makes me feel better. – LaTrease

Having lupus honestly gets depressing sometimes. You will have your good and bad days. The way I cope with it is listening to instrumental music because it’s calm and relaxing. Another way I deal with my problems is writing them down in a journal – it helps keep me calm. I also have a good support system with friends and family who I can talk and vent to. – Kyra

This is a surreal question. I lost a spouse, and it was very hard for me to deal with that. It was initially such a shock to me and eventually led me to sadness and isolation. I knew the grief was beginning to affect my lupus – my numbers were off and my body was out of whack. 

I began to look for coping mechanisms to help me. I would take 10 minutes a day and just quiet my mind and think on good days. I cried a lot, but I felt these 10 minutes helped me. I also began to meditate on the Serenity Prayer. When we are dealt sadness and have a chronic disease, meditating helps calm you down. I had to tell myself I had no control. It restores the energy. Also listening to soft instrumental music would put me in a calm place. I couldn't sleep and lost my appetite but when began to relax my mind, it helped me to bring my physical body back to where it was supposed to be. I knew if I stayed sad, it would only make my condition worse. – Sylvia

It can be extremely challenging to live with a chronic disease while navigating everyday life. With unpredictable symptoms and the uncertainty they bring, it’s normal to struggle with feelings of frustration, sadness, and helplessness. But if those negative feelings become long-lasting and overwhelming, it could be a sign of something more serious, like clinical depression. 

It’s not uncommon for people with lupus to struggle with depression, whether it’s because of the challenges of living with lupus, certain medication used to treat lupus, or factors and forces that aren’t lupus-related. Whatever the cause may be, it’s important to get the support you need to make sure you’re taking care of your mental wellbeing.  Adding a mental health specialist to your care team can be a great place to start! Connecting with your support system, making healthy lifestyle changes, and of course, speaking openly and honestly with your doctor about your symptoms, are also among the ways you can protect your mental health and promote positive feelings. 

Learn more about the signs of clinical depression and how to get help, as well as different strategies for coping with lupus.