Monday, June 21, 2021

So much ... Too much. The Life of a Person with an Invisible Illness

What is an Invisible Illness?

An invisible illness is one that does not exhibit externally visible signs or symptoms. Those with invisible illnesses and disabilities may have symptoms such as pain, fatigue, dizziness, weakness, or mental health disorders.

List of some Invisible Illnesses:

  • Allergies and food intolerances
  • Arthritis, especially rheumatoid
  • Cancer
  • Chronic Fatigue Syndrome
  • Fibromyalgia
  • Depression and mental illness
  • Diabetes
  • Digestive disorders such as Celiac, colitis, and irritable bowel syndrome (IBS)
  • Migraine and headache sufferers
  • Heart conditions
  • Lupus
  • Lyme Disease
  • Multiple Sclerosis
  • Infertility
  • Sarcoidosis
  • Sjogren’s Syndrome

I know that the above poster is a little outdated, but it's still relevant. Especially to this post.
Today, in the spirit of transparency—not looking for sympathy, but for understanding—I will divulge some things that I rarely talk about. Namely, my Invisible Illnesses.
There is only one other person in this whole world, apart from my doctors, that knows the full extent of my illnesses without restrictions. That is my soul sister, best friend, and confidant. Other people have only observed some aspects of it, IF I have shared anything at all.
Today, I remove the veil and uncover everything and what it's like to deal with it all.

With that said. Here is the long list of illnesses that I've been officially diagnosed with, along with the ones I am being test for.

Officially Diagnosed:
  • Rheumatoid Arthritis
  • Degenerative Bone Disease
  • Fibromuscular Dysplasia
  • Chronic Complex Migraine Syndrome
  • Fibromyalgia
  • Pulmonary Sarcoidosis (Currently in remission, thank goodness!)
  • Iron deficiency anemia — Thalassemia
  • Mixed anxiety and depressive disorder
  • PTSD
  • Hypertension
  • GERD
  • Vitamin D deficiency
  • Vitamin B12 deficiency (non-anemic)
  • Carpal tunnel syndrome
  • Sciatica
  • Tibial Tendonitis
  • Eczema
Being tested:
  • Multiple Sclerosis — Results will officially be in on June 30th.
  • M.V.D. (microvascular angina) — Results will officially be in on June 30th.

I promise you that these are not in my head. I am not a Hypochondriac. These have been confirmed by physicians after lots and lots of testing. And at first, it was really hard to get doctors to believe me. Many of them treated me like I was crazy. Like I was just making shit up. 
I mean, it's bad enough to deal with 1 invisible illness; my list is long and intense, but I am getting ahead of myself.

Let me just cut to the chase.

The fact is, I am so fucking tired.
  • Tired of feeling sick and tired.
  • Tired of being judged by people who don't think "I look sick".
  • Tired of the narrow-minded individuals who only see a "lazy fat chick" but have no idea what I am really dealing with.
  • Tired of being treated as if "I just worked/tired a little harder, I'd be fine."
  • Tired of the rushing waves good days vs bad ones. Lately, more bad than good.
  • Tired of having to plan my life around my illnesses.
  • Tired of, well, everything.

I want nothing more than just a normal life. I want to live like other people. Not have to cope every living day. I want to work a regular job, have a good active life, all that shit. I do. God, yes I do. But that isn't feasible for me and it sucks.

Most people can't understand how this impacts every facet of my life.

I have to push myself to get up and go. And, I am a workaholic. I actually love to work. Then there is the never-ending slew of doctors' appointments that take up ALL of my time off (vacation and sick time). It's a fucking disaster. Recently, I was forced to go on Temporary Disability and take leave from work because of the avalanche of medical stuff.

Part-Time Work (InstaCart):
I usually do InstaCart to make ends meet. I am sooooo fucking grateful for the helping hand of my bestie! She comes with me and helps so goddamned much! I mean, you don't even know! But even with her help, I am forced to also weigh out the good vs bad days. For example, yesterday I was pushing myself. Trying really hard. Luckily I got through the day of InstaCarting but not without consequence. After the fact, I was basically a heaping pile of worthless shit. The weakness, exhaustion, pain, and whatnot just drowned me. It was really, really rough.

Daily Life:
Whether it's cooking, cleaning, or just spending time with my loved ones, I have to weigh that against how well I am feeling. Lately, it's been really bad. I just don't and can't. And it makes me feel like shit! Because I WANT to! Enough said.

If you've followed me all this time, you know I am single.
I would love to be able to date and meet someone to spend the rest of my days with. But this is twofold. (1) If I do put myself out there, I have to make sure that the guys contacting me understand that I can't just get up and go. I have to plan everything, and even with that, I will never know if  I might get a flare-up the day of. (2) It impacts my self-esteem profusely because "Who the fuck is going to want to date a 'broken' woman?"
The self-esteem issue impacts everything else. It's like the Domino Effect. I feel worthless, so that makes me feel ugly. I feel ugly, so that makes me look at all my flaws which confirms my ugliness. I feel more depressed so I don't want to get dolled up for anything. Like, at all. I don't get dolled up, so I feel even uglier. The uglier I feel, the more depressed I get, the more I believe that I will never find someone and the vicious cycle continues.

I mean, as far as what it impacts, the list can go on and on for days.

I've tried many times to apply for Social Security Disability. I have gotten denied every time. But then I also can't stay without work because I have bills and responsibilities. So I go to work. If I go to work, Social Security says that I was faking it. Because if I can work, then I was fine all along.
And then, the cycle keeps going.

It's really, truly, hell. So many times I feel like I am fucked either way and all I want to do is give up. You guys just don't even know.

No comments:

Post a Comment