Having A Rare Disease

Disease and illness seems to be ravaging our world. Although there seems to be an uptick in autoimmune diseases, inflammatory conditions, mental illnesses, anxiety disorders, and physical ailments, perhaps it is just that the word is getting out. Either that or we are creating too many subset diagnostic terms.
We hear about many different diseases on a regular basis, but tomorrow focuses on an entire group of illnesses. Rare diseases.

One of the most common complications of having a rare disease is how long it can take to find a diagnosis. Most of the time, health professionals work to rule out every other possible illness and discount a rare disease because of its rarity. This is due diligence, but for patients it can be a long road and sometimes seem pointless or redundant. It's not. It is the thorough way to arrive confidently at a proper diagnosis, because we all know that a diagnosis is only beneficial if it is the correct one.

It gets tougher though. Even when you get the diagnosis, if patients do not display a common symptom in the same way as most, or who display additional symptoms, every encounter with a new health professional is a long conversation explaining how the diagnosis was made.
It is never just the illness itself that creates the most turbulence in one's life. It is the paperwork, the treatments, the explanations, the questions, the waiting, the testing, the procedures, the medication, and the constant presence of healthcare workers. It includes scrutiny and judgement, being watched constantly by people waiting and expecting inconsistencies, and the second-guessing and self-consciousness, plus a hell of a lot of comparison.

I am seeing more and more conversations about illness and I am a bit concerned about where it is heading.
Right now, on every single show, in every reality tv setting, there is a profile made on every contestant, and every single person has something. That's not necessarily new. The complication of this trend is that I don't know that it is always a good thing. Sure, the word gets out about different illnesses that have not always received a feature, but I am also noticing more rolled eyes and more comparisons being made.

Comparison is our biggest enemy.
Comparison is the reason why I shy away from large support groups.

If we compare diseases then no one is going to get ahead.
There is this trend to discount a disease if it is common. Like how arthritis is not a big deal because so many people have it. Or that cataracts is normal so it must not be difficult. That kind of attitude slips into the area of commonality - like because breast cancer is widely known and gets several fundraising campaigns per year that maybe focus should go to a more rare condition. Or the opposite - that if there are only a small percentage of people who suffer from a rare disease then it shouldn't be focused on because it does not improve the needs of the majority.

Why do we do this? Why does it always have to be an 'us versus them' kind of thinking?

The truth is, I think all diseases should have a platform... but having a new disease mentioned on every single show will become tiresome. Having every single day of the year dedicated to something is tiresome. People are not wanting to donate to 365 different charities every single year.
So what is the solution?
How do we get the word out about specific illnesses without becoming tiresome?

I like how Rare Disease Day is run. They focus on rare diseases that are held in a specific database. They include over 1200 different diseases. So, on that day, you can read tens of thousands of stories about diseases we do not normally hear about. We can make a donation to these big charities that cover a wide variety of illnesses.

There are many fundraisers run similarly to Rare Disease Day.
I wonder if we should start grouping illnesses together by the system they ravage.

So maybe having a Cancer month, and every day that month feature one or a few different cancers that affect a specific area of the body.
Then having a rheumatology month. Any rheumatic or arthritic illness is featured on each day, but that that month is specifically focusing on one area.
Gastro month - all diseases of the digestive tract are featured.
Mental illness month - every day is a type of mental illness awareness.

Get where I am going with this?
At the rate we are going we will have over 10 diseases recognized each day of the year and people will stop listening.
That is the last thing we want.
We do not want people to stop listening.

So let's band together instead of breaking things down into separate days. Let's stop comparing and stop fighting to get recognized by stepping on the hardships of others. Let's realize that every disease has its own complications and deserves a platform, but that we need to come up with the right way to do it.