World Arthritis Day Reflections

​Today is World Arthritis Day, and it’s my first since being diagnosed with Psoriatic Arthritis this past year.  As this day comes it has made me reflect a bit on my own journey and the journey of those with chronic pain and chronic illness and how these are connected to mental health as well.
 
Chronic pain has been described as a silent disability.  Most people, if they look at me or at someone else with something like PsA or RA, would have no idea that something so painful is going on internally.  When you look at me, you don’t necessarily see my pain because my joints aren’t all visibly swollen.  When I walk, I try to mask the pain in my joints and adapt to a different gait because walking just around my house can feel like I’m walking on shards of glass. I make excuses for taking an escalator or elevator because sometimes my knees feel too stiff to think about stairs.  Even my psoriasis (thank goodness) is in a place that is not visible to others. There are also so many symptoms involved in an illness like mine that people would never connect to a joint disorder.  When I have told people that I am on this new journey, it has even been dismissed as “just arthritis” and I want to say to them yeah, I wish that was the case. Not only are my joints themselves painful, the tendons and ligaments around them are inflamed as well, which feels excruciating. I’m exhausted some days in a way that I cannot even begin to describe and beyond just a bad night’s sleep.  I don’t sleep sometimes either, as either the pain keeps me awake or wakes me up, or insomnia just takes over. I get anxious when I travel wondering what sleeping in a bed other than my own might do to my functionality. I have brain fog, I get distracted, I get anxiety, and my mood can be affected too.
 
Living with something like this can create anxiety, social isolation, and even depression. I’m faced with decision fatigue as I work through deciding to participate in activities or not. I can injure myself or cause a flare easily by overdoing things which creates anxiety about making decisions – do I exercise because I know my body needs it and it will make me feel better, or do I listen to my body when it is telling me it needs a rest? All things I love – cooking, exercising, hiking, walking, crocheting, travelling – are affected in a way I could never have imagined.  The tasks involved in taking care of myself, my home, my yard all feel so much bigger than they did before and I have to weigh out the pros and cons of every decision I make regarding every task I am faced with.
 
One of the most complicated parts of living with chronic pain is how it is dismissed in our world and how as a woman I am even more likely to be dismissed than a man presenting with the same symptoms to the same doctors.  I was injured in a car accident when I was in high school and had to have two back surgeries which has led to significant chronic back issues. For years pain was attributed to this injury and doctors struggled to get beyond the saying of when you hear hoofbeats, think horses and not zebras.  I would go to doctors explaining how I had pain in joints throughout my body for no reason and was told there was nothing that could be done. I even had a doctor who told me that my pain was just something I was going to have to deal with for the rest of my life and that I would just have to “deal”. I was told to exercise more, lose weight, change my diet, meditate.  It felt as though these doctors were treating my pain as somatization, and not listening to me. As a mental health professional, sitting in that room, I was appalled and as a human being I was devastated.  I know pain, I know broken back in four places pain, and I was being dismissed.
 
Because of this dismissal by the professionals, I would dismiss my own pain too. I would pretend that my pain wasn’t as bas as it was.  If the doctors thought my symptoms were somatic, why wouldn’t I? I would blame myself, I would push through pain, doing the things they would tell me would make things better, only to make it worse. I would get caught in a cycle that just kept feeding into itself, creating more pain, making me feel worse and worse about myself and who and what I was in the world.
 
It took me continuing to advocate for myself, to say that I was not okay once I finally admitted it to myself.  It took me drawing connections between the different pain I had, the overwhelming fatigue, and the brain fog. It took my hairdresser finally telling me the psoriasis on my head was not okay and that I should see a dermatologist and then that female dermatologist hearing me and validating my pain and telling me I need to see my rheumatologist. It took my rheumatologist doing more bloodwork and seeing how bad my inflammation markers were.
 
I tell you this story not to get your sympathy or even your empathy. I tell you this story so that if you are experiencing or have experienced something similar that you know you are not alone. I tell you this story to hopefully help you find strength to keep advocating for yourself and to not allow dismissal to be your only answer.