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Why I Let the Skeptics of Invisible Illness Go

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Let me just preface this by saying that I love the idea of posting pictures and stories of what life with multiple chronic illnesses is really like. It gives me the courage to get through today and face tomorrow. However, as far as my own personal account goes, I don’t want my public social media to be about me trying to prove to others that I’m sick.

I specifically want to speak publicly about my struggles for these three big reasons.

1. Awareness

Some diseases we have are only catalogued as rare because we are under-diagnosed or misdiagnosed. In large numbers spreading the same message, we will be stronger and have a better chance at being heard.

2. Support

I don’t have interactions on the daily with people like myself. Logging on to Instagram and seeing people in the same or similar situation lets me know that I am not the only one suffering the battle.

3. Visibility

If your disease is invisible, then you know what I’m talking about. No one believes you are sick because, “You don’t look like it.” Or you had a good day and didn’t need mobility aid, etc. I don’t want to take the small amount of proof I have and feel like I need to use it to validate my illnesses. I know they exist. I’ve been diagnosed, done my research and I feel their effects daily. Not everyone I come in contact with will believe me that this pain is merciless and constant. Whether people believe me or not does not change the fact that I’ll wake up every day of my life, sick. Having people’s belief and support is so incredibly helpful, but I don’t want to mistake that belief for everything and the moon.

Inevitably there will be skeptics, whether these illnesses are backed up by science research or not, and I need to remind myself that I know these diseases, and validation by someone’s personal opinion on the matter aren’t necessary for me to function in society.

If you support me and are able to understand what I’m going through, then I thank you sincerely. If you do not, then I would be willing to help in sharing all the information that I know. And if you are still a skeptic at the end and hold the same opinion that I am not sick, then my life will still have to go on and I will still have to navigate being sick. Whether the world changes how they see people with invisible disease, the disease itself remains the same. We can change things like our opinions very easily, but this fact alone that I am sick, will never change. Treatments can help, but the cure at present doesn’t exist.

Discrimination towards people with disabilities and disbelief in the diseases themselves are two different beasts — in my opinion. On one hand, you have straight prejudice, and on the other, lack of knowledge and understanding. My take is that these are two very different groups of human beings. One believes that people with disabilities are annoying or shouldn’t exist at all, and the other can’t identify that any health issue does in fact exit.

I have no health left to lose, and yet all of my remaining abilities to fight for. The battle is hard and the road is long. I would like to say every passerby can see all the signs stating facts like health issues, but I can’t control what people at the end of the day chose to acknowledge and I can respect this is as freedom of thought and opinion.

The need to prove my illness, since it is an invisible one, is a natural emotion, but it isn’t necessary to my health or well-being, nor is it realistic to live my entire life on defense because I don’t always look like I’m sick.

Getty photo by abracada

Originally published: October 20, 2018
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