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Managing Big Emotions with a New Diagnosis of Rheumatoid Arthritis

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This applies equally for SLE

PUBLISHED 10/05/22 BY STEFANIE REMSON

Rheumatoid arthritis patient and family nurse practitioner Stefanie Remson shares how she’s managed the feelings of depression, anxiety, loneliness, and inadequacy that came with her diagnosis.

Emotions make life fun. Emotions can be big and very powerful. Emotions are what have helped humans survive, and even have an advantage over other species. Emotions are what make us fall in love, make babies, and fight for our lives. They are also what make us run to safety in threatening situations. Emotions are part of survival of the human race.

If you have been newly diagnosed with RA, you have likely experienced a lot of big emotions. It may even feel like RA has taken control of your emotions and you have completely surrendered the driver’s seat! You are not alone.

Controlling these emotions can improve your RA outcomes and your quality of life. You may even have less pain, too. How does one stay in control of their emotions when first diagnosed with RA?

When I was first diagnosed with rheumatoid arthritis (RA) I had a lot of big emotions. I had overwhelming anxiety and depression, especially in the beginning of my journey. Next I had debilitating feelings of inadequacy. Then came loneliness. These emotions were so powerful that they would involuntarily consume me for long periods of time.

I was unable to focus on my family, my job, and most importantly, taking care of my own health. I knew that managing these big emotions was the key to thriving with RA. I would like to share with you how I managed these big emotions that came with my diagnosis of RA.

Depression

The depression hit me like a ton of bricks when I was first diagnosed with rheumatoid arthritis. I was so very sad. I was deeply grieving the former me. I missed the person I used to be. I was especially in a deep despair over no longer being able to golf, hold a book while reading for pleasure, or do high-impact exercise.

This Swiss-American psychiatrist, Elisabeth Kubler-Ross, said that grief happens in stages:

Denial

Anger

Bargaining

Depression

Acceptance

These aren’t always linear and one does not always experience each stage. I can tell you, I spent most of my time after my RA diagnosis grieving in the depression stage.

In this extended time that I spent in the stage of depression, I had to dig deep and find new things that brought me joy. I had to find new things that I was physically and emotionally capable of doing. I found my love for gardening, audiobooks, and weight lifting during this period of self-exploration. I never would have explored these activities if it weren’t for losing the ability to do the things that I used to. I couldn’t imagine my life without these activities today.

Anxiety

Along with depression, came anxiety. The overwhelming dread and anticipation of what was next was crippling. One of the first things I learned when I was first diagnosed is that the only thing predictable about RA is the unpredictability. I constantly worried about making plans for fear of breaking them last minute due to debilitating pain or fatigue.

I even worried about buying clothes. I would look at pieces of clothing with zippers or buttons and think “What if on the day I wear it, I can’t get it on or off?”

I learned very quickly to have open, honest conversations with my family and friends about plans. I was not seeking sympathy, but flexibility and patience. We learned how to make plans and then make a “Plan B” in the event I couldn’t do the original plan.

I have also found great ways to stay stylish, even in professional and dressy settings, without zippers or buttons. It’s amazing how many varieties of clothes are out there. Don’t underestimate what a great seamstress can do. With these adaptations, I am able to better manage my anxiety today.

Loneliness

Along with the depression and anxiety, I felt very lonely. First, I felt robbed of my ability to be intimate and passionate with my spouse. I felt unattractive from the stiffness and swelling. When I was first diagnosed, I completely stopped trying to be stylish. I lived in yoga pants and baggy T-shirts for a solid six months.

Second, I was too anxious to make social plans, so I didn’t see friends or family for those same six months. This emotion of loneliness took some creativity to conquer. I had to learn new ways to be intimate and reconnect with the people I love. I have since found intimate articles of clothing that I can easily put on and off by myself. I have learned the power of skin on skin connection, which does not always include intercourse. I have also found ways to be physical together without straining my joints. This includes breaks, use of accessories that are assistive, and frequent position changes. I have also communicated that I may need a little more time to prepare or get dressed (or undressed).

My friends and family also know that I might need some help with basic dressing or getting ready to leave for an outing. All of this has actually made intimacy better and all of my relationships stronger. There is more communication, more connection, and more consideration of each other all around.

Feelings of Inadequacy

Lastly, I felt inadequate in every role I had in life at that time. I felt as though I was not a good mother, spouse, friend, or employee. I had to make big changes in how I parent and manage my home. I had to let go of dirty dishes, forget about laundry, and re-prioritize what really mattered with my small children.

I had to ask for more help from friends and family. I also found reliable services at reasonable costs to help with the stuff that my family couldn’t. I also had to ask my spouse and friends to have flexibility and grace with me when it came to time together. Sometimes we would pivot to “plan B,” but sometimes I simply don’t feel well enough to participate.

I also changed jobs. I left the only job I had known for my entire adult life. Talk about a leap of faith. There was certainly a steep learning curve, but today I can say it was totally worth it. Now I work smart, not hard, and I’m so thankful that I made this change. I can confidently say that I have not felt inadequate because of my RA in any role in several years.

Managing my big emotions that came with my new diagnosis of RA has brought me countless new opportunities and improved my life more than I ever expected. I hope my story helps you manage your big emotions that come with a new diagnosis of RA.

Get Mental Health Support

We understand how difficult it can be to cope during these uncertain times, especially when you are living with chronic illness. It is important to talk to someone who can help. You should contact your primary care physician or your insurance provider to learn about the supportive resources that are available to you. Here are other mental health resources for your reference:

Become a Patient Advocate

One of the best ways to help people understand the challenges of living with a chronic illness is to raise your voice by becoming a patient advocate.

The 50-State Network is the grassroots advocacy arm of the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to raise awareness, share their stories, and proactively connect with local, state, and federal health policy stakeholders. Learn more here.

Sources

Sturgeon J, et al. “Affective Disturbance in Rheumatoid Arthritis: Psychological and Disease-Related Pathways.” Nature Reviews Rheumatology. September 2016. doi: doi.org/10.1038/nrrheum.201....

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