Lupus and Anxiety: A Difficult Combination


My Everyday Anxiety Triggers

I have always been anxious. As a lupus warrior, I often feel weakened by that anxiety. It gives my disease the upper hand at times, and I hate it.

Today is one of those days when I just want to give up. I’m struggling with the pain, my physical challenges, and trying to remember everything I need to do (and do it well) when I am having a hard time even forming cohesive thoughts. I feel anxiety taking hold of me.

This weekend will be filled with spring activities with my husband’s family members, who don’t really understand lupus — most won’t even ask me how I have been feeling.

So, with this family weekend, I must figure out how to navigate the sun exposure on the boat, the heat if the weather turns hot, the cold if it gets chilly, and survive poor sleep and not eating until 9 p.m. To them it’s fun, but to me it’s a lupus attack waiting to happen, and I am always afraid of the next big attack.

Then there is my own general anxiety. The family is huge, loud, and there is never any time to be alone and just breathe. The conversations will all be about them, and of course how awesome everything is for them.

Nobody speaks about challenges or difficulties or sadness — ever. Nobody understands that simply being in this mix, feeling the way lupus makes my body feel, is difficult.

There are many things that can trigger a panic attack when lupus flares. Everyone is different, but these are some common triggers that could spark your anxiety:

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Social Gatherings

I had an unusual childhood filled with restrictions that included no after school activities, not being allowed to go on field trips, not being allowed to get my driver’s license, and not being allowed to work.

I feel this helped set the stage for being incredibly uncomfortable with anything in a group setting. Social gatherings mean making small talk, which fills me with a sort of performance anxiety.

Lupus gives me brain fog, so sometimes saying what I’m thinking is difficult, and sometimes thinking clear thoughts is even more difficult. Lupus affects my short-term memory, so I can lose my train of thought mid-sentence or be unable to think of a word — it’s embarrassing and that causes more anxiety.

Tests

Whether it is a performance test with work, or tests at a doctor’s office, I get an anxiety attack thinking about the “what ifs” if I fail the test or it goes poorly.

Doctor’s Appointments

Luckily, I’ve found a great team of doctors, but I feel anxiety before each and every appointment.

What if something else is discovered (I recently was diagnosed with another autoimmune disease, Hashimoto’s), and I have to deal with even more discomfort and medications? What if my doctor does not take what I say seriously, and what if he suggests changing my medications, which can be either helpful or a complete nightmare?

My Weight

I hate the scales. My weight is a yo-yo that is dependent on my lupus and thyroid issues and seems to care little about all the good things I eat and my watchful diet.

It is either dropping for no reason or I have packed on 10 pounds not having done a thing differently. Having no control over anything makes me anxious.

Making New Friends

No. Just no. I don’t have any desire to set myself up to have to explain lupus or my life to anyone new.

It is exhausting and it usually ends with people looking at me like I have two heads. The worst part is they do not usually remember anything I said, and will seem surprised when they learn I have swelling in my heart or lungs or whatever lupus is attacking next.

Then, I must explain lupus all over again. All the effort fills me with anxiety. People looking at me as if I am weird or if they seem to question what I am saying makes me even more anxious.

Staying Somewhere Other Than My Home

With lupus, you never know when things will turn from a small flare into needing a hospital. If I am not sure I will be able to keep to my diet and have access to the types of food I can eat without triggering a flare, get plenty of comfortable sleep, and keep my body a comfortable temperature, I get an anxiety attack.

If it is too hot or I get too much direct sunshine, I get very sick. I can barely walk or talk, and I have partially lost eyesight on a few of those occasions.

It is like I am having a stroke, but it is really the lesions on my brain (discovered by MRIs and caused by lupus) reacting to the temperature and/or the UV rays activating a flare.

If it is chilly or cold, my joints and muscles can soon feel like I have been beaten. All of this leaves me very anxious about what may happen to me next. I already live each day feeling I am at my breaking point, so thinking more is about to strike causes great anxiety and panic.

Surely It’s Not Just Me..?

I often wonder if I am the only lupus warrior who feels anxiety to this extreme. Lupus is to blame for most of it, but I had the natural tendency long before this disease took hold of my life.

I try to meditate, pray, and just breathe through my panic and anxiety, but I must admit that avoidance of triggers is still my best line of defense.

What do you do to manage anxiety and lupus?

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