The Challenges of Living With an Invisible Illness – My Brain’s Not Broken

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Last week, I attended an Out of the Darkness event with the American Foundation for Suicide Prevention (you can read more about that in my post on Tuesday). As every year, this event brings out a mixture of feelings that range from invigorated to depressed. It is a very difficult tightrope walk, and since I am one of the participants struggling with suicidal thoughts / thoughts, I am used to the feelings they evoked. But this year I’ve also thought a lot more than usual about how mental illness can be invisible – not just the effects it has on others, but the consequences for the people who deal with them.

One of the things that was reiterated at the event over the past week (and reiterated a lot in the mental health community) is that working in this area is so important because you never know who is going to be having problems. Someone can look like they have it all together on the outside while carrying a great deal of weight on the inside. And while attitudes in the mental health community are much healthier about this idea, there is still a general idea that something has to “run off” or be wrong for action to be taken. Linked to this attitude is the thought that the problem will go away by reaching or having a conversation. To be honest, this conversation is just the beginning for a person with an invisible disease.

What is an invisible disease?

An invisible disease is a broad term for a disease that is not easily visible. Examples of this are chronic physical illnesses such as arthritis, diabetes, fibromyalgia and others – but also mental illnesses. Since they are not easily visible, spreading awareness is extremely important as the need for education is even greater than for diseases that are clearly visible. These chronic physical conditions can be very different from mental disorders, but the way we talk about them – and the advice we give on how to deal with them – can be very similar.

Living with an invisible disease can be difficult

Living with an invisible disease can be difficult for many reasons, but for me there are two things that stand out that I want to leave you with today. The first thing I wrote about on this blog is that my invisible disease doesn’t just “go away”. It’s something that is a part of me, and while I’ll have days when I look okay or “seem okay” it doesn’t detract from what I often do on a daily basis. I’ve worked very hard to make sure that I can function on the outside regardless of how I feel inside, and the idea that one day I will wake up and be “healed” is not an idea that I’m going to entertain.

The second reason invisible diseases are difficult for me is because I feel like I am not seen for who I really am. When you see the end result of something, you don’t know how hard someone worked to achieve that goal. It’s easy to guess how much hard work went into winning a championship or a promotion, but some of us work hard every day just to get the simple things done. I am not saying that it always has to be celebrated, but it has to be recognized. People with invisible diseases have very different challenges than most people. When you talk to someone, you can affirm their existence and experience in the long run. For all of you reading this with an invisible disease, I see you, I appreciate you, and I wish you the best of luck.

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