It is odd having an invisible disability. We are expected to perform like others, but we have some major limitations.
But really I feel like I am melting into invisibility. That the stagnation of being unable to function is wasting away life. Wasting away quality of life.
We have an invisible disability. We are not invisible.
And that is something we cannot afford to do. Isolation is a horrible thing. I was in hermit mode for at least a decade while I was endured a long depression. And I know isolation doesn’t help with that. We have to nudge our limits. Get out and about, even for short durations. Socialize a little, even if it is just once a month. A little goes a long way. It can be difficult when we feel so rough to want to. And as an introvert, self-isolating is what I do best when stressed. But for our mental and emotional well-being, we have to do a little when we can to help keep our mood up.
Sometimes we can’t leave the house. But sometimes we can invite someone over for a short visit.
Sometimes our friends have melted away. And then to combat isolation we need to go for walks and go to places to be around people. Or join an in real life support group or club for a hobby.
Sometimes when we are in a rough go of it, it feels like we have a half-life and not much of a real life to be lived. It can make us feel invisible in the world for sure. We feel like we have nothing to offer because our limits are so severe. And this is a sucky feeling to have. We want to be more. But we just cannot do more. More is a way to exceed our limits and we have consequences to pay for every time we do that. Exceeding our limits, however, for something we enjoy, with the recovery time after is something we can do. Occasionally. The key is that it has to be something where downtime is available or shorter in duration. And the second key is recovery days. At min two. More depending on what you do. And these cannot be regular events. Exceeding our limits to engage in the world is something we do for our wellbeing as long as we know the price of it.
And, yeah, every day we feel like we are not enough. But that is because we do not value what we can do as much as we should. And sometimes we have no energy for anything or the pain is too high and we feel we lost that day or days. But they are not lost days they are self-care recovery days. And when we can place value on what we can do then we can have some self-compassion for what we cannot.
We feel invisible in the world because with an invisible disability that cannot be seen or known we are expected to perform the way everyone else does. Which is simply impossible although we may try damn hard to fit that square into the circle hole. This makes us feel frustrated, resentful, and angry. That people cannot comprehend we need to pace. That we may cancel plans. That we cannot work at all or very much. That sometimes bad days mean very low functionality. And good days it is extremely difficult to function, and we pay for it. We always pay for anything we do. We have to make sure the price is right. But this concept that because we physically look fine so we should be able to do all the things a normal person can do in a day is seriously flawed.
One thing I noticed when I got my cane for the vertigo is that people understand I have a problem. Hell, they see the cane before they see me. And they are super polite. Opening doors for me long before I get to the door. Letting me go ahead of them in line. Not giving me a ‘look’ if I have to sit down in a lineup. And I am not used to that. Being Seen. I am used to faking it. Put a smile on my face and pretend I am fine because it is easier to do that than deal with the fact people do not get it. We can get this stigma from our families. My family understands, but some do not. Sometimes we are called lazy because they cannot see the pain or the fatigue or the amount of effort it takes us to do things. And they do not value the level of functionality we have and what we can do. And often that is why we begin to devalue ourselves and what we can do. Internalizing that stigma.
We cannot melt into invisibility
We have to live within our limits and pace, yes, but we also have to have some sort of life. And this, my friends, is a difficult balance to find. And sometimes we feel what we get isn’t enough. But I have to say when you value what you can do instead of thinking what you can’t do your mindset changes slowly. And you realize you can get satisfaction from the small things and small accomplishments. Dealing with others is more difficult really. But what they think about you and your illness… isn’t On You. We have to know we will encounter stigma but to not then personally own that stigma. We internalize a lot of that and then we believe it, but we have to stop, pause, and refute their belief with the facts. We are not lazy, we are pacing within our limits or it is a bad functionality day. I also do not feel wanting more is bad. It can help nudge us out of our comfort zone and nudge our limits. It is far worse to isolate and feel utterly useless all the time. But we also have to have acceptance for the life we do have. And even hope it might improve with new treatments and coping strategies. Live the life we have, yes. But grow. Adapt. And change. Try new things to see if they help with fulfillment.