Invisible Illness : My Journey from Shame to Healing

There is something about invisible illness that prompts many people to resort to shaming. If you have an invisible illness or like me, a constellation of them, you’ve heard these words. “You don’t look sick” or “ You were fine yesterday.” Somehow it is important to them that we disbelieve our pain and our struggles and get up to speed and “just get over it.” And whether our invisible illness is physical or psychological we cannot just get over it. The symptoms are chronic and a part of who we are.

I used to try to get over it. I thought it was better to limp along and try to look like everyone else than risk social disapproval. I tried so hard to fit in and be successful in the fast lane, ignoring the mounting evidence that I was falling further and further behind. Then, one day I knew I couldn’t do that anymore. My therapist told me to redefine what success was for me. I had lost yet another job because I had taken too many mental health days and I just couldn’t bring myself to try again. I had to find a different solution.

That different solution turned out to be a free day program for psychiatric patients who needed community support to stay on their medication and transition to jobs and housing. Although in some ways I did not fit this demographic, my major depression was severe enough that I needed the day program to build up the confidence to keep moving forward. And I did move forward, even graduating into a supported work situation. I also applied for and was awarded disability benefits. I worked in the same supported work environment for several years - until it became obvious that was as far as I was going to go.

With continued therapy and finally a medication combo that got me to 60% functioning I finally discovered that it was not only major depression that was holding me in a vise. I also had something called learned helplessness and a serious anxiety disorder called complex PTSD. Ugh. But I still wanted to be useful and to do some sort of work. Eight years ago I found a volunteer opportunity that aligned with my humanist values. What the non profit wanted and what I had to offer, although not a perfect fit, was close enough that I was valued and I could continue to build confidence and real life skills.

Several years later I joined the board of this non profit organization and even more recently I became president of the local group. It turns out that the set of coping skills that I had to develop to navigate my illnesses — understanding and respecting many kinds of people, cultivating the curiosity and courage necessary to find my recovery path, and remembering to give myself essential doses of self compassion all along the way— are helpful in my various leadership roles in this organization as well.

And so, that brings us to the present. My journey toward healing continues. I have found my lane. I have found my tribe. I am psychologically as healthy as I can be. And shame? Nope. Well, um, some days but no longer do I allow others to say I am not doing enough or am inferior because I can’t do what they can even though on the outside I look normal. Those people who try to shame me have no idea how far I’ve come!