How we look reflects how we Feel: If I happen to look fantastic that day, people will assume that I am doing well. I may not be. I may be feeling horrible. In this category I would also add weight fluctuations. Weight gain tends to mean my health is declining and weight loss that I am doing well to people, when it could be just the opposite, or just medication.
It is all in our heads: That because mental and emotional states are a trigger, then it must be all in our heads. Hate to break it to you but stress makes everyone feel physiological symptoms. It is just worse with chronic illness. And the illness itself is a stressor. There is just a connection between these states and our physical wellbeing. I remember a case where I had a severe emotional shock and it triggered the worst vestibular migraine symptoms I have Ever had. Then again when I was emotional because of this… it happened again just as severely. Does that mean vestibular migraines are just psychological? No. It means stress like that can be a trigger. As can let down of stress. Suffering is an emotional thing. And I know from having depression with pain, it made suffering that pain immensely worse. It would be a mistake to separate our mental and emotional wellbeing from our physical wellbeing. They are intertwined.
We have no ambition and are lazy or non-productive: This one arises because of our limitations. Which can inhibit a lot of our desires and goals. But we are human. We have ambitions, desires and goals. We are not lazy or non-productive we just have limitations and must pace based on our health restrictions at that time, which can be severe.
If we are happy, or smiling or otherwise having fun we must feel fine: We have learned through years of experience to put aside our symptoms to enjoy ourselves for limited periods of time at events. Not only that but it is pretty profound stigma to assume we should be miserable all the time because of chronic illness. We do and should have a full range of emotions just like anyone else does. Illness does cause a great deal of emotional struggles though. However, we certainly are permitted to be happy, smile and laugh while enduring pain and illness.
Being at home all day must be nice: It is not. It is frustrating. Sometimes we struggle with self-worth and feeling productive. Or guilt for not working. Not to mention income instability issues.
Opioids make us addicts: This is a brand spanking new stigma. When in fact the stats on addiction include all opioids not just prescription ones so they are rather skewed. Chronic pain patients have about a 1% chances of addiction, although now they are saying 8%… I bet research on that will go up for some odd reason. It isn’t high. It isn’t typically where addiction starts. It isn’t the main problem. But it is a treatment for some. What matters is it can be part of proper pain management. Scientific America is something to read on the subject. To assume we are all addicts if we use pain medication as part of our pain management is a massive bias.
We caused this illness somehow: This is a common perception. That we caused our illness by doing something or not doing something that they can avoid. Sadly, illness doesn’t really care sometimes. It just strikes. And what could I have done when I was young to have prevented it? Not a thing.
That if we took care of ourselves we could treat/cure ourselves: This comes in many forms. With many recommendations. If only you did such and such you’d be fine. If only you didn’t do such and such you’d be fine. If only you were perfect you’d be fine.
We use our illness as an excuse to not do things: We want to participate in our own lives actually. And sometimes illness is a barrier to that. One we do not appreciate. I have not been to a concert in some time because of migraines. Too much noise (obviously), too much lights flashing. Would I like to? Hell, yeah, I would. In regards to this though we do not use it as an ‘excuse’. It is a fact of life. A way we have to move in the world a little differently.
We just don’t want to work: Because that makes sense. Having money vs very little money at all makes so much sense. Because being productive and doing something every day at a job that gives us a sense of self-worth and value vs struggling to function sounds like a real hard choice there. Most of us have had to make really difficult career compromises, sometimes more than once and it never felt Good. And when those don’t work? We feel like a failure. Sound fun? It isn’t.