There are a lot of emotions that go along with having Chronic Pain/Invisible Illness, but a predominant one is the feeling of guilt. And the messages we receive from friends, family, significant others, employers, and society help perpetuate those feelings of guilt.
I'm going to be speaking from my perspective, and I have to admit that I'm making myself vulnerable with this blog.
There tends to be this societal view of invisible illness as "it doesn't exist because I can't see it." And when someone is dealing with invisible illness and is unable to participate in activities or unable to work or needs a disabled placard, the default attitude of society tends to be that that person is malingering. This attitude can come from the general population, family, friends, and even the medical community.
From day 1 when my journey to a diagnosis began, I encountered that attitude. The doctors would say "All your blood work is normal, so there's nothing really wrong with you. You just need to see a psychiatrist." (Remember, this was more than 20 years ago when mental health and physical health were seen as separate systems, and those professionals that chose to work with the mental health side of the medical field were met with the same stigma as individuals with mental illness. To this day, there continues to be a stigma associated with individuals with mental illness and those professionals who choose to work to help that population, but there is work to decrease the stigma.)
Even after my diagnosis, doctors didn't believe me. I was viewed as adverse to attending school and mentally ill. As I became a young adult, I continued to encounter this attitude within the medical field, but I also encountered it with friends. It wasn't uncommon for me to have a good day one day (and completely overdo it), and a bad day where I wasn't able to do anything the next. "But you were fine yesterday," is a statement I've heard many a time.
No. I wasn't "fine" yesterday. And the nature of these conditions means that they are unpredictable. While there is a lot within my control (what I eat, my sleep hygiene, taking my medication and supplements, etc), there is a lot not within my control. Something as simple as weather changes or fighting off an illness can throw me into a flare. Stress is a huge factor in managing these conditions--the higher my stress level is, the more challenges I'll have.
Unfortunately, the unpredictable nature of Autoimmune Disease/Chronic Pain means that there are times I have to cancel plans at the last minute with friends or call in sick to work. It means that there are days where I do very well and appear very "normal" while the next I'm not able to walk. Or breathe. Or I'm screaming in pain. Or I collapse in the shower because of fatigue and overheating. Few people get to see me on the days I'm struggling.
The thing is that I want to spend time with friends. If I make plans with someone, it's because I wanted to make those plans with them. I want to work. I don't call in just because I want to play hooky. And when I have to cancel something or miss out on something, I feel guilty. I hate letting people down.
A number of years ago, I had made plans with a coworker/friend to do something on a day off, but when the day came, I woke up running a pretty good fever and feeling like I had been run over by a truck. I was no where near safe to drive, and so with regrets, I called to cancel plans with this person.
Her response? "I wish you had let me know you didn't want to get together sooner. I could have made plans with someone else."
I was frustrated that a supposed friend couldn't see how much I was struggling. But I felt the hit of guilt that I had to cancel.
I also hate asking for help, and I frequently have to rely on my husband. There are times I feel like a burden to him. I have to ask for a lot of help, but there are definitely times that I'm not able to contribute much. I feel guilty because I feel like such a burden.
I should add that I have amazing friends and an amazing husband, all who assure me regularly that I'm not a burden. An example of the awesomeness of one of my friends is when I broke my foot. She came over to visit and cleaned my kitchen for me. (And she knew me well enough to move my crutches out of my reach before she started cleaning the kitchen.) This is also the same friend who will check in with me when we're out to make sure I'm not pushing it to the point where I'm not safe to drive home. I can let the mask down around her.
But the guilt comes in other forms. Use a disabled placard to park in a disabled designated spot, but don't use anything to help you walk? People look at you as if you don't really need the spot. (Some will even make comments.) The mind starts up with "am I taking this spot away from someone who needs it?" and "could I walk a little further today?" The fact is that on the days where I can walk or that I'm feeling good, I don't use the placard. So when I use it, it's because I need it. And yet, I'll still question myself. Similar things happen with using the disabled stall in public restrooms, where (logically, I know) what happens in there is no one's business. But the feelings of guilt make me want to broadcast to the world that I needed the bar on the wall to help me back to standing.
So often, society views individuals with invisible illness as lazy. Again, logically, I know I'm not lazy. I have a photography business, I create jewelry, I write, I have a private practice, I'm working on a third masters, I work full time, and I still try to fit in more stuff. And yet, I feel guilty for taking a nap when I have a day off because it may mean that I'm lazy. The truth is that I'm doing what I need to do to care for myself, and even at that, I'll let guilt propel me to push myself even more, and then I pay for it later.
I'd like to offer some sage advice on how to deal with feelings of guilt, but I'm still working on that myself. What I will say is that your health is your priority, and you need to care for yourself first and foremost.
Definitions of medical conditions listed in my medical chart
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