Mental Health Awareness Month: Lupus and Mental Health


Would it totally surprise you if I said I suffer from high-functioning anxiety? AND depression? AND obsessive compulsive disorder? 

SURPRISE! 

But, seriously, anyone who knows me knows that I’m like an energizer bunny, until I’m not. Then I’m a sea lion bathing in the sun, except I’m not sunbathing in the sun because of lupus and photo-sensitivity............... 
Just ignore me. *face palm*

SO.

Chronic illnesses like Lupus or Rheumatoid Arthritis or ME or Crohn’s (and the list goes on and on…) do a number on a person’s mental health. Stop for a minute and think about this: 

Covid-19, right? 
Sucks, right? 
To go from plans and schedules and to-do’s to social paralysis and, basically, house arrest…
Man, that sounds terrible. 
Must mess with a person’s mind. 
That isolation. 
That lack of connection and contact. 
So Bad. 
So Sad. 

Source: @holisticallygrace
Wellllllllllllllllllllllllllllllllllllllllll *ding ding ding* Welcome to Living with Lupus! (or any comparable autoimmune conditions...there’s a lot of them [conditions] and a lot of us!)

Having something that is hard to describe, show, or, even, diagnose can play a number on your mental health, as well as the inevitable lack of understanding from family, loved ones, and your community because this disease is so complicated. You are bound to run into ignorance (yes, even from people you'd least expect, like medical professionals or family members). Writing this has brought up a lot of "stuff", and has taken my mind on a trip that has persisted.

This post has been really difficult to get down into words. I've written and rewritten this about 8 different times, each time pushing my publish date (with the timeliness of Lupus Awareness month and Mental Health Awareness month in mind. Don't want to "miss an opportunity" while we have the world's attention. Thanks Corona [but, like, seriously...it's an upside]). This is hard. and exposing. and makes me feel really vulnerable. It makes me worry about how I will be perceived. Can't help myself, always yakking away. I struggle with a variety of mental health issues and habits that affect my every day. Issues and habits that I've collected over the years and throughout my experiences. Things that most would deem simple, mindless activities paralyze me or linger in my mind in a way that is debilitating. But I've been programmed to not "be a problem" or to "be seen not heard." It is not about "mind over matter" or a switch that can be flipped. It's stronger, more powerful, and equally as persistent. It is only in my adulthood that I am really finding my voice and learning how to communicate my situation and my needs. Boundaries. I'm learning boundaries. 

So, as you read this: Be kind. It takes A LOT of work to un-learn unhealthy habits or ways of thinking. It is something that is worked on every.single.day.of.our.lives. There is no easy fix, especially when the work has to be done everywhere and by EVERYONE, not just within ourselves. You have a loved one struggling? Their environment plays a huge part. You are a part of their environment...what can you do to help? what changes can you make? what can you be so bold and brave to ACTUALLY ADDRESS? (<--- that cultural self-preservation move of "get over it and move on" or "don't deal" or whatever it is...it's not healthy - not matter how uncomfortable it makes you). 

We need to starting having these uncomfortable conversations. We need to start being open to the idea that each and every one of us are very, very, very flawed. 

"TO BE A BETTER VERSION OF YOURSELF, YOU MUST FIRST FACE YOURSELF...and it can get UGLY."
 -ME, 
just now, writing this. 
But, like, I mean this for real, for real. 

Lupus and Mental Health is bidirectional. United States (US) Department of Health and Human Services states that “mental health disorders have a serious impact on physical health and are associated with the prevalence, progression, and outcome of some of today’s most pressing chronic diseases."

Systemic lupus erythematosus (SLE) has frequent psychological comorbidities, of which depression and anxiety are two common manifestations.

Anxiety. Depression. We hear these words thrown around a whole bunch. The same way we hear people frivolously throw around mental health conditions like they are fashionable accessories for the day in an effort to make themselves more “complex” or “interesting” or "relatable." I see you. 

But, let’s back up for a second… I’m sure you have a whole bunch of questions:
What is Anxiety, exactly? 
What is Depression? 
What is the difference? 
How does this affect a healthy person vs. someone with lupus or an autoimmune condition? 
Any useful coping strategies that can help during moments of anxiety?

Anxiety, in its simplest terms, means a feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome. Everyone experiences some form of anxiety in their lives. This is completely normal. In fact, it would be strange if you experience no anxiety ever. Now...Anxiety DISORDERS are a completely different beast. 

For the sake of simplicity, I will be talking about Generalized Anxiety Disorder (GAD). There are a whole slew of anxiety disorders, but the most common is GAD. It is also what I suffer from. The symptoms of Generalized Anxiety Disorder can vary from patient to patient. These symptoms may include:

* Persistent worrying or anxiety about a number of areas that are out of proportion to the impact of the events
* Overthinking plans and solutions to all possible worst-case outcomes
* Perceiving situations and events as threatening, even when they aren't
* Difficulty handling uncertainty
* Indecisiveness and fear of making the wrong decision
* Inability to set aside or let go of a worry
* Inability to relax, feeling restless, and feeling keyed up or on edge
* Difficulty concentrating, or the feeling that your mind "goes blank"

Physical signs and symptoms may include:

* Fatigue
* Trouble sleeping
* Muscle tension or muscle aches
* Trembling, feeling twitchy
* Nervousness or being easily startled
* Sweating
* Nausea, diarrhea or irritable bowel syndrome
* Irritability
* Heart palpitations

Source: @what.is.mental.illness
Depression is something different entirely. "Depression is a mood disorder that causes a persistent feeling of sadness and loss of interest. Also called major depressive disorder or clinical depression, it affects how you feel, think and behave and can lead to a variety of emotional and physical problems. You may have trouble doing normal day-to-day activities, and sometimes you may feel as if life isn't worth living. More than just a bout of the blues, depression isn't a weakness and you can't simply "snap out" of it." (mayoclinic.org) 

Depression is 2x more likely to be found in SLE patients that the general population. Additionally, 1/3 of people with SLE have some form of anxiety. Put them together, you have one complicated creature - like me! hi. 

Listed below are among the most common psychological and physical symptoms of depression:

* Feelings of helplessness or hopelessness
* Sadness
* Crying (often without reason)
* Insomnia or restless sleep, or sleeping too much
* Changes in appetite leading to weight loss or weight gain
* Feelings of uneasiness, anxiety, or irritability
* Feelings of guilt or regret
* Lowered self-esteem or feelings of worthlessness
* Inability to concentrate or difficulty thinking
* Diminished memory and recall
* Indecisiveness
* Lack of interest in things formerly enjoyed
* Lack of energy
* General slowing and clouding of mental functions
* Diminished sexual interest and/or performance
* Recurrent thoughts of death or suicide

Probably the best single marker for clinical depression is loss of interest in activities and responsibilities that used to be important (Lupus.org). Clinical depression may not always be recognized in people with lupus because its symptoms can be similar to those of active lupus (for example; lack of energy and trouble sleeping can be attributed to the lupus itself) (Lupus UK).


Your psychological well-being is an important part of your overall health. Make sure to keep the dialogue between your healthcare provider and you open. They can't help you if you're not honest. Keep your doctor informed about how you are feeling; good health is mental and emotional as well as physical. 

Source: @shagey_
In my particular case, I have habits of fixation on negative experiences and it can take over my train of thought/entire day. I can be confrontational while wearing my heart on my sleeve. I am emotional and am empath. My symptoms also manifest physically and it can feel like I'm literally dying. I have been through a lot and, quite frankly, I haven't "dealt" with all of it. This goes beyond my health experiences. This goes as far as to my childhood, upbringing, culture, societal pressures and perceptions, etc. My health journey has simply added to the complexity of it all. I am learning and healing every day. 




Before I leave you, here is a coping strategy exercise I stumbled upon on Instagram that really resonated with me by @anxiety_wellbeing.  

"Reconnect with a feeling. 
When we thinking negatively we in turn experience a negative feeling. 
This isn’t an exercise on beating yourself up because you are having negative thought because thoughts are normal. If you are having a tough time, there is a reason [for it]. There are things going on you and you may be in a tough environment  or maybe having constant negative outside input/influence.

Art by: @m_d_n_f_
What you CAN do is this:

Accept the reality that these thoughts exist and they are real to you. (Pay attention to how these thoughts make you feel.) Say to yourself, “I’m thinking about X and it’s making me feel X way. I am probably feeling a number of things: stressed, tired, [down/depressed due to exposure to negativity (the media lately...and generally), icky from not eating well], etc.

I'll distract...right now...and help the real causes. 

[Now that I’ve recognized this, I want to shift my thinking…] 

Ask yourself the following questions (to try and attempt to shift your thinking from negative to positive...negative thoughts really mess with your mood, and, quite frankly, if you’re me, your entire day) and end mantra:

What DO I like?
What CAN I look forward to?
What CAN I do for MYSELF to help this? “My ideas and actions will make the change.”

Fill out the “Likes” section with these newly formed positive thoughts to return to in moments of stress and feeling down. Make it your own as it is only for YOU. Keep it with you. Whip it out when you are in need of something to help you reconnect with a positive feeling."

Revel in the serotonin shooting through you and smile. Go on with your day.

Now, I realize that this multi-step coping mechanism may not work for everyone. It may even work sometimes and not all the time for those that found it “worked” for them at all. It’s about trying and consistency. You may find that some parts work for you and others don’t. If lupus has taught us lupus warriors anything, it is ADAPTABILITY. Make it work for you, so you may find relief from the tight grips and bonds of anxiety and bad coping mechanisms. 

In my next post (later this week), I will share more tips and tricks on how I manage my stress levels and deal with the daily hurdles my mental health throws my way. Lookout for MY DETAILED "COPING TOOLKIT"coming soon!

Until next time,

Solange xx




Resources for those struggling with their Mental Health:

1-800-273-8255

1-800-662-HELP (4357)




Sources used in this post: 
Various Instagram accounts (cited in image)

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