Not a me too moment…

Living with rheumatoid arthritis (RA) for 19 years has taught me one thing. When you tell someone you have Rheumatoid Arthritis all they hear is the word “arthritis” and they say, “Me too!” Then they will go on to explain their osteoarthritis (OA). Now I understand how painful osteoarthritis is. It is not a joke. It can lead to bone on bone joints and require surgery. The “me too” response indicates a lack of awareness that there is a difference between OA and RA. Oseteo arthritis is a degenerative disease. Rheumatoid arthritis is an autoimmune disease that is systemic in nature. It not only affects my joints, it affects my skin, internal organs, eyes, and more. I run fevers, feel like I have the flu, and exhibit swollen and aching joints on the regular. I have taken biologic drugs, low dose chemo, steroids, injections, and tons of pain medication. Tylenol Arthritis and ibuprofin don’t but a dent in my pain.

Recently, I’ve been more open about the fact that I also have depression. More specifically, I have been diagnosed with a mood disorder related to chronic illness. According to the Mayo Clinic this type of mood disorder is defined as, a persistent depressed mood and a significant loss of pleasure in most or all activities that’s directly related to the physical effects of another medical condition. There are times when my depression interferes with my life, there are times when I push through without any being aware. Recently, I’ve compartmentalized my depression. I function in the workforce, but come home and shut everything else out. I have difficulty speaking to people on the phone, especially about my recent losses. I haven’t returned calls only texts. I avoid going out as if it was my job (right now, most people think it is due to the pandemic). Now to be clear, I’ve been battling depression for over 10 years. The pandemic, isolation from social distancing, and losing multiple family members in less than a year, have made my depression just a bit worse. God knows we are all going through some sort of depression right now. I realize I am not alone in this experience.

Edited in Prisma app with Leya

After multiple losses, more people are asking me “How are you doing?” My typical answer is, “I’m hanging in there.” That is as good as it gets right now. I really want to say, “I want to stay in bed all day long and sleep so I don’t cry.”, but I don’t. I’ve learned not to admit how low I am feeling. When I have admitted that I was actually struggling with depression the response I got most often was “Me too”. Again, I realize people are going through a lot and I may not know their struggle, but when I hear “me too” I often feel like my admission is being disregarded or not seen as valid enough to discuss further. One person did say, “You have depression? You don’t seem depressed?” I’ve not had one person say, “How can I help?” or “How are you dealing with your depression?” Just “me too”. Now I will say a few people have reached out to me afterwards, but it’s been few and far between. I remember telling people for the first time and feeling such a sense of anxiety that I wanted to pinch myself as I was saying the words. It was like ripping off a really painful bandage. As traumatic as it felt to me, not one of the people in that group of “good friends” ever brought it up to me again. It was years ago and it was soul crushing.

I’ve discussed this with my therapist and the thought is I may have shared as more of a reactive response to pressure that is too hard for me to handle at that time. I admit, that is probably true. I’ve done a little bit of research and after reading multiple articles and advice pieces I realize not only did I share it in response to situations that were uncomfortable, but I may have shared it with the wrong people, at the wrong time, in the the wrong way. Honestly, I didn’t know there was a right way to tell people your deepest secret about your mental health. So, I discussed it more with my therapist. Her response? Focus on me and not others responses to me.

For years, I’ve been open with my physical illness because I limp and get sick often. As much as RA is often thought of as an invisible illness, in my case, it can be very visible. I shared because I was always afraid people at work would notice me not working as fast as I had. I was afraid to be judged as incapable or no longer being good at my job. Irrational, I know. In reality, it was my fear of no longer recognizing myself in my own body that made me share my story. Over the years, I’ve learned that I am not weak. I am simply human. My new therapist tells me I need to treat myself with grace. I’m struggling to figure out what that means. I read an article about how to live better with depression and all their suggestions were things I am struggling with…..eating habits, getting sleep, doing household chores, not procrastinating. I swear half of my depression stems from my inability to control these exact things. One thing I did like was “creating a wellness toolbox“. I’ve been focusing on things that do make me happy. My pets, listening to/reading cheesy romance novels, blogging, and binge watching shows and movies online. When I look at that from an outside eye, I feel like that isn’t doing enough, but according to my therapist, it’s a good place to start.

Over the years I’ve managed my depression well but now I’ve lost a bit of control. If binge watching Teen Wolf is what is making me happy, then that is what I am going to do. True friends will be there for me when I can climb out of this hole. Life will keep moving forward even if I am two steps behind and that is okay (psst: I think this is giving myself grace….). The next time someone shares with you they are depressed, don’t “Me too” them, even if you are feeling that way. Listen and be a friend. There will always be time to share your story after they have shared theirs.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

7 thoughts on “Not a me too moment…

      1. I see my therapist tomorrow. it is an ongoing struggle as you know. I have proudly been doing therapy and medication for 25 years now. One of the best decisions i made.

        sounds like an arthritis 360 talk show?

        Liked by 1 person

  1. I can relate to “compartmentalizing”. I function well at work, manage to do what I need to around the house, and by all appearances most people wouldn’t necessarily know my limitations. But I have a lot of difficulty managing my anxiety, especially this last year. Evenings are the worst. I can be completely exhausted but unable to sleep because I’ve buried how I feel all day, but ultimately can’t escape the chronic sadness and anxiety.

    Liked by 1 person

    1. I’m sorry you are experiencing this too. I can’t keep up with my house. I’m embarrassed and disappointed in myself. I think you make a really good point. I bury it all day and I just can’t escape it when I get home. I wish you well and thank you for sharing! xx

      Like

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