Lupus Makes Me Feel Lonely
Last updated: April 2023
Sometimes walking on this lupus journey can be so lonely. It sucks the life out of you and makes you feel ostracized from the ‘normal’ world. I have been in the loneliest places since diagnosis, and it's really difficult to get out of that trench. Sometimes my coping skills work but other times not so much. I have learned to be okay with either situation. I also had to figure out how not to be so hard on myself.
What is loneliness?
Loneliness is a feeling of isolation or being alone. It can be caused by a number of factors. Loneliness can be experienced when someone is physically alone, or when we someone feels emotionally or socially isolated. Sometimes, loneliness can be a short-term feeling, or it can be a long-term experience. It is not necessarily a bad thing, but it can become a problem if it starts to impact our quality of life.
Loneliness and Lupus
Those of us with lupus may experience loneliness due to the isolation that the disease can cause. Additionally, the fatigue and joint pain associated with lupus can make it difficult to participate in social activities. As a result, sometimes we may find ourselves feeling lonely and isolated.
Loneliness and lupus can be difficult to deal with, but there are ways to cope. There are a number of ways that helped me overcome loneliness. Here are 10 of them:
- Connect with others. I had to spend time with family and friends and get out and meet new people. It really helped to talk to people, and really listen to what they have to say.
- Get involved in activities. I made it a point to join a club. Ultimately, I took a class, and began to volunteer for lupus. Doing these things made me feel good and really helped to reduce those feelings of loneliness.
- Be open to new experiences. I began to say yes to invitations, even if I didn’t feel like it. Trying new things helped me broaden my horizons and connect me with new people.
- Be yourself. When I stopped trying to be someone I wasn't, it was helpful. I had to be honest about my thoughts and feelings. This helped others to connect to me.
- Set aside time for yourself. One of the most important things I had to do was to make sure I schedule some "me time" daily. This time I did things that made me happy like reading a book to taking a long bath.
- Stay positive. I had to stop dwelling on negative thoughts. Instead, I had to focus on the good things in my life.
- Be patient. I stopped expecting my loneliness to be removed overnight because it surely wasn't created that way. Eventually, I learned to be patient and take my time getting to know myself. I had to learn not to be afraid to be alone occasionally.
- Seek professional help. When I was struggling to overcome loneliness, I spoke to a therapist. They helped me to identify the root cause of my loneliness and work on addressing it.
- Get a pet. My dog was and still is my lifesaver. She provides me with companionship and unconditional love. My precious doggie also helps to reduce my stress and anxiety.
- Reach out. At times the loneliness had me so afraid. After a while, I had to reach out to others. Sometimes, all it took was a phone call or a coffee get together to make my day.
Coping with loneliness
Loneliness can really be a hurdle to try and overcome. Sometimes I still feel all alone in a crowded room. Finding ways to cope has helped. The activities listed helped reduce my feelings of loneliness and isolation. Additionally, starting my own support groups and participating in others for people with lupus, helped me realize I wasn’t alone. These groups have provided valuable social interaction and support.
Have you ever dealt with loneliness? How did you handle it? Let me know in the comments.
Which resource do you think is most urgently needed in the lupus community?
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