Stigma of Invisible Disability
Recently read Work Ethic, a post by bpnurse, in which she discusses her life since she stopped working and went on Social Security Disability Insurance (SSDI).
People judge those of us with invisible disabilities. We even judge ourselves.
Someone once asked me if I questioned the ethics of receiving disability. I explained that my disability wasn’t visible. I ran down my history of hypomanic workaholism and subsequent crashing into depression, rapid cycling and mixed states which lead to my hospitalization.
Although I appear fine, traditional work and I do not mix well. My bipolar type II is well-controlled with medication and my careful avoidance of triggers to mood cycling.
Because my brain disorder is invisible and because my husband provides for our family, someone believe that I take advantage of a government program I do not need.
You see, I receive SSDI, which is based on my payment into Social Security taxes from past income combined with my current inability to work. I do not receive SSI, which is based on need (lack of resources).
Still, with this understanding, even I have felt guilty about being on disability (SSDI), about not being “productive.”
One of my psychologists (I’ve been in therapy since I was 18, so I’ve seen many psychotherapists over the decades) suggested I reframe being on disability (SSDI) as a long-term sabbatical. Reframing enabled me to accept my changed life circumstances.
Since then, I’ve further reframed my experience as God making me stay home to care for my high needs son (a migraineur who has struggled with co-occurring anxiety, depression, and health issues).
Of course, I don’t receive disability to be a stay-at-home mom. But, I didn’t want to be a stay-at-home mom. So, I’ve chosen to reframe my experience this way. I had to be broken to leave my ambitions behind, to accept a new lifestyle, to reprioritize my life.
Now, I do other work — I volunteer my writing, my time, and my knowledge and experience — while on my extended sabbatical from my former work.
What I can do, I do, and I do it well. No longer expect myself to work as I once did. It wasn’t good for me or for my family.
Its a great post
Give up, for sure. Not as evil as to hope we will die. Giving up for many would lead to death, though.
Thanks. I honestly think they hope many of us will die or give up before we win.
I’ve heard from too many people who’ve been unable to get SSDI for the help they need. So sorry for your struggles in getting the help that you need. Good for you to fight for what you need.
I wish you the best with your blog, and with living with anxiety, depression and fibromyalgia.
For those reading this comment thread, according to the Mayo Clinic:
“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.”
I have been fighting for years to get SSDI, and it is so sad how hard they even make it to get help, let alone how bad they make you feel for needing it in the first place!
i related to this 100% i actually write my own blog called Diaryofadisability about my non-visable disabilities and how they affect my life
It is very difficult to explain, or even accept. I don’t want to be tired constantly or miss things in life because I simply have no energy. I’m learning how to prioritize, recognize stressors that set off the fatigue, and eliminating nonsense from my life.
Thank you for your understanding and advice. It’s rare to find individuals who truly understand.
Yes, I agree our culture overvalues productivity. We need more balance, and focus on the “simple things”.
Thank you. I get it. Autoimmune diseases like Hashimoto’s are invisible. Others don’t understand how debilitating it is to have your thyroid attacked. As you well know, chronic hypothyroid results in fatigue and many other symptoms.
I’m glad that you’ve accepted the changes in your life and in your former professional identity, and are finding new purpose.
Our culture overvalues productivity and doesn’t acknowledge our intrinsic worth.
I recently gave up a teaching career that I worked very hard for, but after being diagnosed with Hashimoto’s, I have finally come to accept that I can still make a difference. I’ve been looking outside the box to give me a new “purpose “, and recently began my own business. I’m not sure if it will eliminate any stress, but at least it provides me with a creative outlet and the ability to regain a purpose. Losing my identity was my biggest struggle, by far, and the judgement of others because they do not understand an invisible disease. Thanks for sharing your story.
My pleasure 🙂
You underestimate yourself and the clarity of your writing. Plus, expressing ourselves when not thinking clear offers others insight into how our minds work when symptomatic.
Plus, I edit. A LOT.
Thank you! Flattered.
Reblogged this on Take a Ride on My Mood Swing and commented:
Oh, my kingdom for the clarity and focus expressed in this post. Unfortunately, a chaotic mind seems to be my cross to bear and people don’t have time to weed out the coherent thoughts. I will let Kit do it for me and a big thanks to her for writing this.
Reblogged this on and commented:
Mental illnesses have a huge impact on our professional lives and the invisibility of the condition makes everything harder. I am glad I found this piece.
Here another mental health fighter shares her experience.
I grateful for her honestly and clarity.
🙏 Thanks, Kitt.
Forgot to send you and your friend my condolences for the loss of his brother. So sad.
Thank you. Tragic how PTSD affects our veterans.
Understand the “Work Ethic” blog from bpnurse. Thinking of a Gary Larson cartoon from “The Far Side” with you facing two doors. The one says “Damned if you do” and the other says “Damned if you don’t”. Like bpnurse, your illness would have overtaken your ability to continue working.
Recently, received an e-mail around Memorial Day Celebration from a friend. His older brother was a NAM veteran on 100% disability for PTSD, but died from chronic alcoholism. There are a lot of NAM family members that bring the remains of a loved one to the [ https://www.npr.org/2018/05/28/612980545/human-ashes-left-at-the-vietnam-memorial-find-a-not-final-resting-place?sc=tw ] for they never left NAM. Think you made the right choice and are doing quite well with advocacy and education on your sabbatical. Thanks for sharing.
Totally agree. Why I believe my illness wasn’t properly diagnosed until I was 39. I was rewarded for being a workaholic. Corporations take advantage of workaholics, focusing on short-term productivity over keeping employees healthy over the long-term.
I have bipolar disorder. When I get hypo-manic and am compelled to be productive, I don’t seem to get that sense of shame that comes with being depressed and in need to take care of myself. I believe it is a cultural thing that compulsive work is rewarded, even if it is a symptom of illness. Having been conditioned by my culture, I have absorbed that attitude and judge myself when I need to slow down for my mental health. The good news is that I can change my attitude towards wholeness and health.
Thank you, Cassandra.
Thank you, Mark, for your generous spirits and for your ongoing support.
So important to understand that you are not alone.
Kitt, don’t feel bad at all about receiving the help you need. This is beautifully written, and makes me understand exactly where you’re coming from.
And well done for standing in YOUR truth young lady. And helping many others through here and in other ways like your book, which is saving many in money, outside help and just being that friend to support a heart during a sometimes desperate time in their lives. What price is that, especially in the equivalent community cost?
What millions don’t understand is…they judge themselves through their fears and then judge others by that level. You on the other hand are understanding and letting your fears go, and no longer judge because of the empathy you have gained on that journey. Now tell me who understands worth and gives from that place <3
Stride on Kitt, standing in your truth no greater love can you give…to yourself or others <3
I’m going to steal BP Nurse’s response to your comment on her blog post because I agree with her 1000%:
” You put it so succinctly, and in such a way that people can understand. Bravo!”
You are so gifted at breaking down the complex topic into logical sections so that even an exhausted gal like me can get it. I’ve always loved that aspect of your writing. 💕
Thanks Kitt for speaking from the heart about your experience. I greatly appreciate your honesty. I also am grateful that I am not alone on this journey.
Reblogged this on cabbagesandkings524 and commented:
Kitt O’Malley – invisible disability – the stigma is not just on the outside