Living with any chronic illness or even a persistent difficult situation can drag you down. Lupus is no different so in this article, I am going to look at the effects of lupus on your mental health and some strategies that may help you. It is true that lupus is, usually, a chronic longterm illness and that in itself can cause depression and anxiety since constant pain and exhaustion can definitely bring you down.
As always I’m not a medical professional and you should definitely be discussing your particular issues with your health professional, but hopefully, this article will help you unravel some of your thoughts and help you access the appropriate help and support.
Lupus can bring up feelings of grief for the life you want or used to have, fear of the unknown and future! Anxiety and depression amongst other things! It can feel that your health is so far out of your control you can feel helpless while you wait for the next health drama and try to manage existing ones!
Maybe you had a job you loved but now you can’t work, or you have reduced your hours and of course, both of those can add a financial strain!
Having to give up work or reduce hours and also the reduction of socializing due to fatigue can make you feel isolated and lonely which can cause depression.
Your outward appearance may have changed due to the disease itself or the meds which are helping keep you alive, like steroids! You may be experiencing hair loss all of these things can dampen your enthusiasm for life and affect your self-esteem.
Lupus fog is a very real problem, the inability to think clearly and remember things can be very frustrating, you can’t get into a flow because you have to stop to try to remember what you are doing or how to do it!
Sometimes the Lupus is the cause, sometimes the treatment is the cause, sometimes depression has set in!
Managing Lupus is hard enough and then throwing depression into the mix can be a significant challenge!
For myself, I had to give up work and I was unable to go out much. I would arrange to see friends and then have to cancel because I was poorly, then feel really bad that I had canceled and become anxious about making any new arrangements! My world became very small and my anxiety ramped up. I felt like everything was outside of my control and this manifested in feeling really worried all the time about EVERYTHING! I would feel guilty that I wasn’t doing much in the home AND not bringing money in, I would want to hyper manage everything so I had some control but then be too tired to actually manage anything!
I worried about my children, all adults bar one, I worried about my husband and his driving job, I worried about money, about dying, about literally everything!
I cried, a lot! I cried about being ill, about the state of the planet, about not being enough, about a friend of a friends dog dying… saw it on Facebook! I would cry because I forgot what I was doing!
So how can we manage these very real emotions and feelings, how can we get some control over our lives and our mental well being?
First… talk to your doctor and family if they are supportive. I cried all over my doctor, I literally fell to pieces right there! I was embarrassed but desperate my head had become a scary place to be! He suggested anti-depressants and I didn’t hesitate! I spoke to my husband and accepted his help and support. I am fiercely independent and can be difficult to help! For some reason, I love to help others but see it as a weakness if I need help!
The doctor told me that it would take about two weeks to start to feel better and that was about right. For those two weeks, I just gave up fighting. I slept as much as I wanted and did as little as I could, I have responsibilities so I still had to do some things but meals were freezer foods, housework minimal and I watched Netflix.
I felt better, in myself, just because I had got some help and support and also I felt empowered, I had acknowledged this part of my illness and was facing up to it.
I also bought a book Despite Lupus and I started to implement some of her ideas. I began to try to take back my life, my identity… I am not Lupus I just have Lupus. Have a look at this article for more info
I would write down my thoughts and feelings and if I couldn’t write I would do a quick doodle showing my thoughts, I’m no artist so it was only for me I needed to get it all out of my head… I needed headspace!
I started to put in place self-care, I always felt guilty about taking time for me because I felt like I was doing so little but I began scheduling in a long bath or a spell on Netflix or some pampering time.
As I healed mentally I was able to make better decisions, I used the spoons method to plan my day with short bursts of activity rather than trying to clean the whole house at once! I also started to look into other ways to help myself like following the Goodbye autoimmune diet.
I began to feel more in control and less controlled by the symptoms I had my hair cut short as it was flat and getting thinner, this boosted me no end easier to keep up and I wasn’t constantly mourning my long thick luscious locks!
Lupus began to be more of a small piece of me rather than overwhelming me and I started to remember who I am, I found my smile again! Having control over the depression and anxiety also gave me greater control over the Lupus I was able to work with it instead of against it.
It isn’t surprising that our mental health suffers and it deserves the same attention we give our physical health. A healthy mind will help with the symptoms, you will cope better with the pain and all that goes along with your illness.
If you are struggling make it a priority to get the help you need, get supported to get healthy in your mind as well as your body. Maybe meds won’t be the way forward for you, perhaps talking therapies would suit you better or a regular massage or maybe all of the above! Find what works for you and make keeping yourself well a priority.