When You Start to Believe the Stigmas About Chronically Ill People

We all have a pain story. I ask how did this happen to you? And you tell me… your pain story. Generally it is facts about your diagnosis and sometimes misdiagnosis. Our pain stories can be complicated because sometimes diagnosis is complicated. But what pain means to us is vastly more than that. We think about it often. How it affects us. What we compromised or gave up for it. How it affected our loved ones. Its role in our lives. And “self stigma” often gets tangled up in there. We may pick up the stigma from around us or it’s implied, and we may absorb it into our own story and then inflict it upon ourselves, basically internalizing social myths and prejudices.

Here are some stigmas we may internalize:

We are a failure. We have given up on life. We have no natural resistance to what life throws at us and we are a failure at handling life in general. Gee, thanks. Little harsh on that one. But the fact is, we often reflect this one back at ourselves especially when we cannot work… well, we are a failure then. It isn’t just that we are exceeding our pain limits and cannot work, it is that we failed as a human in society. Sounds dramatic, but we think it, don’t we?

We are weak, like weak in character. As in, it is a flaw we have. We are not strong enough to handle things other people handle. Fragile. Emotionally weak, if we happen to have a mental illness.

We are lazy. Not that we are fatigued, or having a flare, or need to pace ourselves. No, we are actually just lazy. And we may feel that we are inherently lazy, even thought we know we are fatigued.

We are naturally stressed-out people. I have heard this referenced for migraines and fibromyalgia. And sometimes I have heard it said back to me by people with those conditions. That we just have “high stress” and that it “affects us more” and we “can’t handle it well.” And maybe that is why we got sick in the first place? Er. First of all, I think positive stress can be healthy and how we get things done. And I think we are stressed physically after we get chronic pain, and generally handle it better than most would given the situation we deal with.

We are worthless to society. We are not productive, we just suck off the system. We are a drain on the system. We don’t actually do anything so we have no worth. And we can sometimes feel this and internalize it and feel horrible. Because what we do is so important to people. People forget people are important and intrinsic worth is important. Who you are as a person is important. I could likely name more.

You might have even encountered more. I know I have encountered more. Like “I am faking,”  “I am not in as much pain as I say I am” because “I am complaining, exaggerating or because I am a woman and therefore just expressing it in a more exaggerated fashion.” The “it is all in your head” stigma… where they deny what you have exists… because being mentally ill to them is also stigmatized. So to them, “all in your head” is equally as bad an option. The whole “you don’t have a disability because it isn’t ‘physical’” and by that the person meant visible. Lots of stigma out there.

So what do we do? Many of us have sucked in this abhorrent stigma and made it our own. When we feel bad about our pain or about our illness, analyze where that feeling is coming from. Why are we feeling bad? Do we feel worthless? Why would we feel worthless? Is it because we can’t work? Then we know we have taken on the stigma that we are worthless to society because we are not productive by certain people’s standards. I think you should question where your negative feelings about your illness or pain are coming from. We all have these sorts of negative beliefs and ideas about illness that sneak in there.

I remember when I was diagnosed with fibromyalgia I felt a massive stigma about having it. People debated whether it really existed and called people just lazy and wanting to get on disability, and said it was just “all in their head.” It made me feel ashamed and embarrassed to admit I had it. So for a very long time I never mentioned it to people I met. I refused to talk about it even when we were friends for some time. I refused to mention it to employers. As a result part of me still thinks other people think this way. Part of me feels worthless when I am not productive enough because I fear being seen as lazy.

Another example is depression. I refused to mention to anyone I was depressed even though I knew I was, including my doctor, due to medical stigma. If you mention you have depression I’ve noticed some doctors immediately minimize the chronic pain you have, believing all of a sudden it’s all in your head and that it is all depression. When I was younger and mentioned depression to a doctor, he completely ignored my pain which then delayed further my diagnosis, even though the depression was due to the pain. Often we feel weak and ashamed with depression as well, again as though this is a character flaw, and I believe this is from internalizing the pervasive stigma around mental illness.

The fact is that the stigma around us that we have heard, read and encountered can have an internal influence on us, unfortunately. It is sometimes hard to notice but it is there. So remember, self-stigma exists and all those ugly things we hear and have heard for years can stick to us, replay in our minds and can come out as self-loathing thoughts. Always question those thoughts because you may find you are telling yourself and believing a lie you have been told. Sometimes it is a good idea to write it out even. Write that thought down and then work out why you think that. If that ends up being because of self-stigma, then start thinking about thoughts to replace it with, that you know are more valid.