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Lupus Symptoms

Depression, Loneliness, Isolation, & Lupus

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Feelings of loneliness and isolation are common. And upwards of 25% of Lupus Warriors are also battling major depression.

A blog by Barbara Leech describes it thus:

“If it were not for the connections I have on Facebook and Lupus support websites, I am certain I could go weeks without connecting with anyone outside of work and family. That is a depressing and lonely fact about lupus that nobody seems to realize, except those of us who have the disease.”

The Lupus Foundation of America acknowledges that feelings of isolation and depression are very common for people with lupus. There are a lot of reasons for people with lupus to feel depressed: pain, stress, fear, and frustration as the disease progresses and lingers are the big ones. But depression can also be caused by missing chances to spend time with the people around you. 

Lupus makes it difficult to go out and do things with people, or even interact with them at home. Some people might not believe that you are sick and brush away your symptoms. These can seriously affect your mental health.

You should not feel bad for feeling sad – it is completely understandable. None of these are your fault… nor, are they insurmountable. Around 25% of Lupus Warriors are battling major depression.

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Isolation and loneliness

As humans, we need social interaction. Even for an introverted person, doing activities with family and friends is important to maintaining mental health. If these activities involves exercise, it can also promote physical health (which has its own effects on mental health). 

A lot of times, however, lupus can get in the way of these important interactions. Pain, fatigue, and flares can force Lupus Warriors off of the field, leaving them cut out of social gatherings and cut off from friends. Going outside with lupus can become difficult, especially with photosensitivity. Going to work with lupus can become an endurance test that leaves no room for socialization. 

The problem is, lack of social interaction can wear you down and can lead to depression, which makes it more difficult to go out and interact. This spiral of depression that only gets worse. 

Social interaction, therefore, is vital to Lupus Warriors, as much as any medication. 

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Physical appearance and depression

You might think that worrying about your appearance is vain, but you have a right to feel good about how you look. Feeling good about how you look can help you get out, interact with people, do better at work, and give you the confidence you need to keep moving forward.

Lupus can cause visible signs, such as a limp or, in the case of cutaneous lupus, rashes and discoloration on the body that can affect how you feel about yourself. Lupus medications such as corticosteroids can cause weight gain, including increased fat deposits on the face – a side effect known as “moon face.” 

Weight gain and rashes can be more noticeable to the patient than people around them. In fact, many people might not notice at all in some cases. But – especially when it is on the face, such as a malar rash, these visible symptoms can affect confidence and cause people with lupus to withdraw.

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The right strategies to get help

How do you break out of loneliness and depression? Though important, it isn’t by any means an easy task – and you might not have the energy to do it. Still, there are things that can help.

Mental health providers and medications

Sometimes, you need extra help to take care of your mental health. If you are struggling with depression, or having a particularly bad flare-up, add a psychiatrist and a therapist to your treatment team. There are also many different antidepressants available for depression, including Selective Serotonin Reuptake Inhibitors such as citalopram (Celexa), Fluoxetine (Prozac), and sertraline (Zoloft). 

Some types of antidepressants, serotonin-norepinephrine reuptake inhibitors like duloxetine (Cymbalta) and venlafaxine (Effexor) can also help with pain as well. Exactly how they help with pain is not fully understood. It may involve a change in the neurotransmitters in the spinal column that reduce pain signals for chronic pain, arthritis, and neuropathic pain. 

Looking to learn more about mental health? Check out these Top 4 Questions answered by a Licensed Clinical Social Worker.

 

Take care of your physical health

Taking care of your basic life needs can do a lot for your physical and mental health, and can help stave off depression as well as give you more energy to go out and be active with friends. Reserve time and energy to get an appropriate amount of exercise, eat a healthy balanced diet, and get plenty of rest – not only will you feel accomplished, but you will also feel better and will have more energy to devote to yourself and your life.

 

Find your fun

Lupus can keep you from doing your favorite activities, but there is always a way to enjoy yourself. Try to find fun things that you enjoy and that don’t take a lot out of you. Take time to relax and enjoy yourself – it is your life, after all. Having lupus doesn’t mean that you can’t enjoy it.

 

Look the way you want to look

Taking some time to look good can make you feel good. Looking like a million bucks can help you feel like a million bucks.  Makeup, clothes, and freshly done hair or self-care can all help!

 

Find the positive things in life

Lupus can be overwhelming, painful, and frustrating, but there is always a bright spot or silver lining. Taking time to focus on positive things – your strengths, a beautiful thing, something good that happened today, even a small success – can help boost your mood and keep you out of the depths. It’s not a cure-all, but, especially with such a negative news cycle, lingering on the good things can be a boon.

 

Fighting isolation

The chemical imbalance of depression and the pain of lupus may involve medications, but social isolation is very fixable. Finding support groups is a great way to bring you into contact with other lupus warriors. Volunteering for causes or activities that you enjoy can also help. Your friends are still there, too. If you can’t meet in person or make a call, text, or reach out online. If you want to get more old-school, you can always send a letter or a card. Who doesn’t love getting mail?

If you find yourself really needing help right now, you can call the national helpline:

1-800-662-HELP (4357) 

They can help you immediately and it is a 100% free service.

Comments (15)

15 thoughts on “Depression, Loneliness, Isolation, & Lupus

  1. I try to get out for a purely social activity at least once a week, I also grocery shop the same day each week along with a group of other folks and we stop for a coffee or lunch then as well! I make sure my hair is done, fresh clean clothes, makeup and nails. It makes me feel better and gives me something to look forward to. My sister and my good friend call me everyday.

    1. Since being diagnosed with lupus it has definitely changed my life in so many ways on so many levels. I have to apologize to my family and hand full of friends all the time simply because getting through most days is a task for me. I’m very lucky bc the ones that are in my circle are very understanding to my situation. I don’t make plans bc often times I can’t keep them. Most of my time is spent in the house, I do however make sure I get up, shower, put some clothes on & make myself feel like something even if I do nothing. It makes me feel good about myself in spite of what I battle on a daily. Self love and self care is very important to hen you have this disease bc it can literally feel like it’s taken everything away from you that only you understand. Loving yourself through this very complex & difficult disease I have found to be very important. I have discovered that there is purpose in pain. God has done amazing things within me bc I have a lot of time to spend with Him & even though I have this horrendous disease that’s a thorn in my side many blessing have occurred.

  2. My wife’s Lupus is on her brain making it even more difficult for both of us. Thank you for the article. Battling on.

  3. Thank you for all of your articles but this one really hit home. I lost my left leg above knee to Lupus. People can say some stupid things to you. But I see it as a lack of knowledge. And yes this statement really sucks ” but you look ok”. But it’s ok do what you need to do to look and feel better. Take care of your face with good products. Get rest if possible. And find a Dr who will listen to you. It is very important. Everyone have a blessed day.

  4. This article really hit home with me. I have been struggling to stay positive and move on with my life. Work added more anxiety and depression. I suffer with severe pain most days. I was fired October 10, 2019 because I was not as fast as the younger, healthier nurses. It was on my 29th anniversary with the hospital. I was basically isolated almost completely.it was very hurtful and I felt betrayed. Not to mention this was my livelyhood and health insurace, and all my doctors were part of this health system.. It has been difficult restarting my life. I do not have a new job yet because I have not found something that I feel qualified for. Now the Covid-19 has us self-isolating

    1. Since being diagnosed with lupus it has definitely changed my life in so many ways on so many levels. I have to apologize to my family and hand full of friends all the time simply because getting through most days is a task for me. I’m very lucky bc the ones that are in my circle are very understanding to my situation. I don’t make plans bc often times I can’t keep them. Most of my time is spent in the house, I do however make sure I get up, shower, put some clothes on & make myself feel like something even if I do nothing. It makes me feel good about myself in spite of what I battle on a daily. Self love and self care is very important to hen you have this disease bc it can literally feel like it’s taken everything away from you that only you understand. Loving yourself through this very complex & difficult disease I have found to be very important. I have discovered that there is purpose in pain. God has done amazing things within me bc I have a lot of time to spend with Him & even though I have this horrendous disease that’s a thorn in my side many blessing have occurred.

      1. thank You for sharing. beckne

        Hello, I understand you have so many worries and are reading all the information on these sites. First, remember there isn’t a lot you can change about your diagnosis, but you ca. change the way the disease affects you. Like you, in the last 5 years, i have not been able to sleep at nigh5z. i am so fortunate to have the best spouse who has put up with me… The scary part for me is missing out. I have made all kinds of adjustments to try to sleep at night. I was diagnosed at the age of 32 after years of symptoms abd the struggle, blood clots, kidney, pad, and strange rashes in my ears… As i have aged wutg my situation. i am now unable to undergo any type of surgical procedure, since i have an extreme case in my spine ( crushing injury years before my sle diagnjsis). I have had secondary infections, i am on oxygen 24/7. due to valley fever – white lung disease… kidney nephritis, cardiac, thyroid disease and chronic clots with a protein c and s dificency. so, you see, it’s all going to be relative to your new life. as a Lupie… cab i tell you? I live an amazingly happy life? I truly am so incredibly happy with my life, success, and support lies within my ability to use my daily “devotions” (gongyo abs Nmrk🙏🏼). which changed my own outlook on how to cope with this disease. For me, in my faith, it isn’t this outside force of we don’t get what we can’t handle in life, because some higher power has a plan for me? No way is that a fact for me, that said, because of my own faith. being a lupie, is a part of me because i have my karma to work through, that negatively is enough to break anyone, i choose to not allow it to break me. even while i am in my own bed night after night, wondering if i’ll ever able to get to a 9-10am appointment. or when my family comes am i really getting out taht day? I have had to stop reading too much online because most people who are online are having symptoms, we don’t come to a forum like this to dig deep into our goid days, or the happiness we all share. So, if tve dr is not an option abs you have lupus, please try to reach 211 on a landline? maybe they can help you, apply for social security disabilty jf your married under your spouse if not go teh ssi route like, today or tonight. the best defense is offense. i can try tk look at this page again if yoh ghee me your state and age i will direct yoh to someone- somehow . i strongly encourage you to find the Sam-e herb abs the luous vitamins, lots of water and a lot dk fresh green foods as ling as your blood clots are rules out and hour not on warfarin. it’s very important to pay attention abs journal – we will try tk be here for you… but for now. I will pray for your ability to cope abs read my typos.. please know we are all with you

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