There are days…

https://youtu.be/ru5jWvEpxAs?si=o8eRwzoGWmDUCkwl

I came across this post today, and I completely understand it.

Chronic illness is often so debilitating. Not only must you endure the symptoms, but you do it whilst watching the world go by.

Sometimes the simplest of tasks are not even a consideration.

And the people around you think that if you rally, you can do the things. And even if you do rally and manage to do the things, the whole time you are just hoping you get through it and get back to the safety of your bed.

Of course there is a level of anxiety and fear added into the mix. How would there not be when you have experienced what can so easily go wrong.

Also you don’t just get to have a chronic illness and just know what to expect. Everyone is different, every day is different and medications come with a bunch of side effects.

Presently I am dealing with a reoccurring issue that could have dire consequences if it’s not controlled. And sometimes there just are no helpful answers. Doctors, even specialists, often don’t know what to try next. Advocating for yourself is a prerequisite. And if you are lucky enough to have a Doctor that is open to being presented with options, as I am, you are super lucky. Because the arrogance, audacity, condescension and ridicule delivered by a lot of the medical profession is soul crushing. And you dare not make a stand, because then you run the risk of being patient profiled, anxious, hypochondric, aggressive, etc. Once you have that on your record, you are just filed in the health anxiety basket.

Personally I was very fortunate that my Gp retired three years ago, I was passed along to another doctor in the same surgery. Clear eyes, diagnosed some serious long standing conditions, which on occasion have been life threatening.  I will always be grateful that he was able to look past my health anxiety (you can’t not have it when you know you  have conditions that are being dismissed) and diagnosed what should have been diagnosed many years earlier.

We people with chronic illnesses want to live, want to participate, but often the choice is taken from us. And the only possible way for a healthy person to understand this, is to experience it.

The reason I found Christina Applegates words so powerful is because they are raw and relateable. Personally I do enjoy life, but I’ve had a lot longer to assimilate illness into my life. But I do have days, when I say, I don’t know if I can do this anymore.

I want to live, I love life, but my life is not the same as a healthy person. And as bad as it feels to me, it’s definitely not as bad as some.

For varied reasons, I navigated a lot of my health journey on my own. There are a few treasured people who have been there along the way, but there were also many who contributed to unnecessary heartache through sheer ignorance. I am lucky that the adversity made me strong and resilient. But for the grace of God, or whomever/whatever you believe to be your higher power, forward has always been my option. But I can relate to those that have found it too much to deal with and would never judge their choices.

At this point in life, my circle is small, mostly by choice. Not because I am angry or bitter, but because I’ve learned what is, and  what is not important.

Please, please know that most chronically ill people are not malingering. There are many reason, that you would probably never even consider (because you have never had to), as to why they have to sit on the sidelines for most of life. Thy are trying to make the choices that allow them to live, with the least amount of fatigue and pain.  If you are a person that can’t fathom that, or at the very least believe their words, then step away, because I can assure you, you are harming them.