Dealing with the Emotional Part of My Lupus Diagnosis

Dealing with the Emotional Part of My Lupus Diagnosis

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Anxiety and depression seem to be tag-alongs of lupus. Before my diagnosis, I would feel sad sometimes, but I wasn’t depressed. I would allow myself a three-day pity party, before saying, “OK, enough; time for solutions.” With lupus, there are no solutions. Life as I knew it is gone and I am left searching for a new normal.

For a while, I found ways to cope; to tell myself that everything happens for a reason. While I do believe in that saying, I have trouble figuring out the reason. I want to be of service and by speaking about my experiences — mental, physical, spiritual, and emotional — I hope to help others as well as myself. Perhaps that is the reason.

My emotions run the gamut of happy, on the days of lower pain levels and fatigue, to sad and anxious when my symptoms increase. On the bad days, I wonder how much longer I have to live like this? But I try not to ask questions to which there are no answers; when I do, my sadness and anxiety grow.

I joke and tell people that I am an extrovert in recovery because I spend most of my time alone. I avoid social situations. Some people with lupus don’t do things or go places because of high levels of pain and fatigue. But I find it difficult to be social because I’m tired of feeling dismissed as an attention-seeker. It’s hard to seek attention when you’re alone. I enjoy my own company; had you told me that I would feel lonely four months ago, I would have laughed at you.

I had a friend stay with me for three weeks over the holidays. I had thought that spending a lot of time in proximity to someone who wasn’t one of my children would drive me crazy. However, the morning she left, I felt lost. Afterward, I decided to try to make new friends, but following a few encounters, I reverted to my previous position that alone is better. I know I should give people a chance but it takes a lot of energy to find someone who could be part of your tribe. So I made up my mind: It was time to speak to a professional.

I recognized many of the signs of depression in myself and knew that if I didn’t seek help, I would be heading down the road of no return. I am usually a very happy person; I refer to myself as a “joy junkie.” However, recently instead of wanting to bring smiles to the faces of others, I just wanted them to go away which was out of character for me.

I’d done all I could to try to get my “happy” back on track, but nothing had worked. Now, I’m teaching myself to sew and taking a language class outside of my home to push myself to interact with others and engage in activities I hope will bring me joy. I’m creating a vlog of things to do in my new city and I hope this will motivate me to go out when I have the energy. I meditate every morning and examine my emotions as I strive to become a better version of myself. I hope that if you recognize signs of depression in yourself that you will do your best to get back to your happy place.

If you or anyone you know is experiencing suicidal thoughts or needs someone to talk to, please call the National Suicide Prevention Line at 1-800-273-8255 or visit suicidepreventionlifeline.org.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

6 comments

  1. TC says:

    Dear Kellie —

    You’ve inspired me to discover that what’s been inhibiting my progress is that I’ve always tried to “fake it.”

    I always force myself to do more than I’m physically capable of and hate it when I fail to pass for normal. Unfortunately, “fake it until you make it” doesn’t seem to work with lupus treatment (LOL).

    We can’t find the right answer until we “face it.”

    Please don’t feel bad about becoming anxious and depressed — I’ve been there for far too long. You’ve been proactive and come to face it and seek solutions much sooner than most people I know.

    I hope you’re finding progress with your new arrangement. Speaking from experience, depression can be a side-effect of certain drugs; the thing goes away within a few days of quitting the offender. Aside from that, soon after I switched to a completely oil-free diet, an anxiety that’s been nagging me for years suddenly lifted, and when I went back to a drug that always made me highly depressed and suicidal, that side effect never resurfaced again. The drug still impacts my mood, but on a much milder level.

    You’re joy itself. 🙂

    • Kellie McRae says:

      Good morning! Well one thing I can say is I learned early on that I cannot overpower lupus. I do what I can and when my body says enough, I say ok. In the early days, I thought, I can do this, I’m tough and I have passed out in public places and had a few unflattering moments of expelling meals that let me know, I can think I’m tough but I have to figure out how to work with this thing and still get stuff done. Def no faking it until you make it, I think before I was of that mindset but once I got this diagnosis, I was like ok, this is what is, now how do I give it what it wants while getting what I want?

      As far as these meds, I’d like to toss them all in the trash but that would be foolish 🙂 then all the side effects would go away…right? lol Kidding I honestly think there is just so much that changes all at once that you just have no choice but to feel some overwhelm, my hope is that at some point, I will be able to reel in a few aspects of my crazy life and feel a little more in control.

  2. TC says:

    I try not to mention religion too specifically in my comments to keep “lupus” what unites us all, but, again, speaking from experience, I find reading one or two devotionals each day helps me be in a better mood.

    I use the Bible app (that’s the name!). There are infinite devotional reading plans available, each with a different purpose. They provide different perspectives on my situation, which helps me get out of the funk sooner.

    I really like the ones by former Destiny’s Child member Michelle Williams, “Anxiety & Depression: Finding Hope” and “Believe in Me.” They are lovely. 🙂

    Hope everyone find peace and solace in each’s faith/ spirituality/ beliefs. 🙂

    • Kellie McRae says:

      We all must do what helps keep us sane for sure. I am more of a meditation person, it def helps keep me calm at times. Sometimes its a task to get in the right mindspace to get it done but when I am feeling at my lowest, I just go to my quiet space and try to really get in a good place. I also do affirmations and recently put many of them to the page. It helps me to try to focus on the more positive aspects of my life but having someone to talk to about these things is not a bad idea. I am looking forward to seeing how my therapy sessions will help me going forward.

  3. TC says:

    One more thing —

    I found that nutrition affects the mood too!

    Malnutrition is both a symptom and a cause of lupus, because intestinal issues etc (I’ll skip the details.)

    With a vegan diet, nutritional balance is sometimes harder to achieve. The only iodine supplement that works for me is Ojio “Iodine Lugol’s Solution 2%.” It’s a topical supplement and is absorbed through the skin. I apply a drop of it to my wrists each morning. Many chronic mood and tummy issues have been vastly improved ever since.

    Not sure if this will work for you, but I hope it helps 🙂

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