When I was first diagnosed with rheumatoid arthritis (RA) four years ago, I didn’t know much about it. Google got me up to speed quickly. I soon learned all about autoimmune disease, systemic inflammation, disease-modifying drugs, synovitis, joint damage, and RA comorbidities.
What Google failed to prepare me for was how my rheumatoid arthritis would affect my mood and mental health. I wish I was more prepared for this. I wish every newly diagnosed RA patient could be more prepared for this.
I often heard from other people, “It’s just arthritis, you’ll be fine.”
I was anything but fine.
Living with RA means your body and mind are always on a roller coaster. Physically, you can wake up feeling fine and be felled by a flare just hours later. I’ve been hit with extreme, out-of-nowhere fatigue and have had to cancel my plans — and felt guilty toward those I’ve had to flake out on and sad about missing out — time after time because of the unpredictability of RA.
Emotionally, rheumatoid arthritis can cause clinical depression and anxiety. I’ve struggled to remain positive and productive as I saw my debilitating symptoms impact every conceivable aspect of my life: my hobbies, my career and livelihood, my relationships, my educational pursuits, my socializing, and my basic functionality.
Rheumatoid arthritis makes me feel so many things and so many moods, depending on the different physical and emotional struggles I’m confronting at any given time. Learning how to recognize, acknowledge, and cope with these feelings has been one of the most important parts of my journey as an RA patient.
The Negative Moods of Rheumatoid Arthritis
RA makes me feel grumpy because functioning through chronic pain and fatigue — especially around others who don’t get it — can be extremely frustrating. It’s hard to see your body not working like it used to or like you need it to.
RA makes me feel angry and bitter toward people who did not support or help me when I needed it or toward those who have not shown me understanding or compassion, especially when they assume I am fine because I “don’t look sick” or I am “too young” for my disease to be serious. I’m angry when I’m told I am fine by people who’ve never had to question their health like I do.
RA makes me feel annoyed when people tell me I shouldn’t listen to Western medicine or when they incorrectly opine that the disease-modifying medicines I take to treat my illness are actually making me sick. They’re not — and I desperately need them.
RA makes me feel worried that I can’t be the mother I need to be to my son. RA makes me worried about whether others will accept me as I search for love and friendship, like any 33-year-old woman does. I often struggle with when to reveal my disease to others.
RA makes me feel hopeless because my disease is not curable, comes with so many misconceptions and myths, and is invisible to many. RA made me feel like a fraud at first because of those misconceptions and how others don’t believe me.
RA makes me feel afraid of what is around the corner. How will I handle this for the next 30 to 50 years, if I am lucky to live that long? Will I still get to live a full life? These are scary thoughts to have before your 30th birthday.
RA makes me feel envious of those who can manage a full day without pain or taking a nap. RA makes me feel envy of those who can hold down a full-time job. I never thought I would miss working so much. RA makes me feel envy of those who have the support they need because their disease has empathy and understanding.
These different moods cut across the five stages of grief I experienced over the first two years of living with RA: denial, anger, bargaining, depression, and the final stage — which seemed like it would never come — acceptance.
There was no straight order to these stages for me. I would fall back and forth among them as I went through the grieving process. This were messy and sometimes disastrous. But they passed.
Seeking Help and Getting Through It
I know now that the anger, self-pity, and suicidal thoughts with which I struggled were not just me being dramatic. It was me suffering from disease and going through the cycle of pain and stages of grief.
This was especially heightened during the postpartum depression I experienced after the birth of my son, when my hormones and inflammation were raging uncontrollably. That was when I saw that I needed help from a health care professional.
A clinical social worker was a key component in my health care team and helping me accept my new life. Before my diagnosis I had no idea what mental health care could offer me, and how much I needed that compassion. Not all health care providers who save you are patching up wounds or prescribing medication. Some simply listen to you and help you understand you are not alone.
As I went through medication after medication, I found myself having to stop many because the side effects exasperated my poor mental health state. I learned why some drug commercials say that medications “may cause suicidal thoughts and actions or increased depression.” It takes time to find the right RA medication that works for your symptoms and doesn’t cause too many side effects.
My rheumatologist referred me to a psychiatrist with experience in RA patients and helped me find the appropriate treatment to help control my emotions and moods. Over time as the medications started to work, I had less anger, mood swings, and thoughts of suicide. This helped drag me out of the darkness where I was stuck.
Since living with RA, I’ve observed that my depression tends to be highest during flares or when my hormones are irregular. If you think women are moody during PMS, imagine how that can be with heightened rheumatoid arthritis and depression. I find myself for about a week each month overly sensitive, very hungry, and extremely tired, on top of my usual RA symptoms.
I’ve learned that tackling and reducing stress is crucial for my physical and emotional health. The whirlwind of chronic illness will always exist and I can only control so much. I must find peace with some of it and ask for help and support when I need it: from friends, family, or health care profes-sionals.
The Positive Moods of Rheumatoid Arthritis
After spending a lot of time on this tumultuous road to acceptance, I learned to start living my new life. It is a process and it takes time, with many mixed and overwhelming emotions. Now, in addition to the negative moods I felt so deeply in the beginning, I also can recognize and appreciate the times I’m able to feel positive and happy.
RA makes me feel grateful for the people it has brought into my life, those who have shown me true compassion, understanding, love, and support. I feel grateful to those who dedicate their lives to help us through nonprofits, researching our diseases, and treating us so we can still live fulfilling lives.
RA makes me feel hopeful for scientific research and modern medicine.
RA makes me feel kindness from complete strangers or people from my past came to me after my diagnosis.
RA makes me feel love from my chronic illness community, who always have my back and understanding when I need to vent my frustrations.
The Day-to-Day Struggle of My RA Emotions
I still struggle. There are moments when I can’t open something because my hands just don’t work very well anymore, or when a cute guy on a dating app un-matches me after I tell him I live with an invisible disability. There are days when my body just can’t handle very much, when the pain seems unreal, or when I feel like an empty shell of a person because of crippling fatigue.
One of my biggest struggles is the shadow of loneliness that has been cast on my life. It’s not easy to make friends or relate to people anymore when your life tends to focus around chronic illness. Most of my friends now are other chronically ill patients or mothers of young children. We hang out during the daytime, which leaves some lonely evenings.
I live with permanent mental scars from abandonment and rejection when family and friends disregarded my RA diagnosis or took the nearest exit. Somehow indifference hurts more than contention. Holidays have become marathons of lost memories.
But on the whole, my diagnosis of rheumatoid arthritis has made me realize I am so much stronger than I always thought I wasn’t. In my darkest times I’ve always held onto that fragment of hope, hope for anything better than this. I realized that actions speak louder than words. I began to fight to get my life back.
Rheumatoid arthritis taught me how powerful hope can be for my physical and emotional health.
Rheumatoid arthritis taught me how powerful the words “this is my life now; this is how I can move forward now” have become.
Rheumatoid arthritis taught me resilience.
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