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6 Things I Need 'Normal' People to Learn About My Chronic Illness

I don’t know exactly how or why I developed a chronic illness, but I did.

Somehow I went from a college kid living my life to a 31-year-old woman with knee replacements now living the bionic life.

I have learned to accept my disease and how my life is. The fact of the matter is, I actually love my life.

At this point, I don’t have a problem with my disease.

It’s “normal,” or healthy, people who seem to have more of a problem with it than I do.

1. This is my normal.

I have a health situation that will always inhibit me from doing things like “normal.”

I will always question if I should Uber or walk because I’m not sure if my legs will cooperate.

I will always be conscious of my diet choices and alcohol consumption to ensure I don’t set off a flare.

I will always have to visit a doctor, participate in lifelong physical therapy, take meds or have IVs and always make conscious efforts to stay ahead of my disease.

However, I can’t constantly look at my condition as an obstacle.

To ensure that I am living my life as “normal” as possible, I simply need to make modifications to my lifestyle that best suits me and my disease.

2. Your health advice is (respectfully) BS.

Unless you are a healthcare professional with accurate information regarding my illness, or you are powerful healing shaman that can take away my disease with a simple touch (please email me if you can do this), you have no business offering any health advice.

I appreciate your eagerness to help, but respectfully, stop.

Any mainstream supplement, diet, treatment, prayer, affirmation or drug, I have already tried or considered.

A note to multi-level marketing (MLM) sales peeps: Most products you’re selling consist of fake nutrition laced with soy, sugar, and chemical bi-product. Just because you bought a “welcome kit” and watched some info videos doesn’t mean you know how to ease inflammation. In fact, I’m personally offended you think my struggle is a business opportunity.

I have very specific drug, diet, and lifestyle protocols implemented that are tailored to my genetics and disease, so that pill you saw at GNC with “joint support” doesn’t apply.

3. I’m not too young.

Autoimmune disease affects upwards of 50 million Americans.

It does not discriminate by age, race or gender.

An autoimmune disease is when your immune system can’t tell the difference between foreign invaders and it’s tissues. As a result, those that have autoimmune issues present different symptoms depending on their diagnosis.

In my case, I have arthritis in my joints. Arthritis is often labeled an “old people” disease; however, anyone at any time can get it.

4. Stop calling me out.

For the last 12 years, I have been battling pain and inflammation in my entire body. My knees are the biggest problem area. Over time, my knee joints developed deformities and as a result left me with a sickkkkk pimp walk (I kid…but I have a little limp even with knee replacements).

I can’t for the life of me understand how “normal” strangers over the course of 12 years, at least once a day, have come right up to me and asked, “Why do you walk that way?”

Thousands of times (not exaggerating), I have been approached with the question, “What’s the matter with you?” or “What happened?”

Seriously? I appreciate the concern, but it’s none of your f*ing business.

5. I’m not a flake.

I love spending time with my friends, drinking some whiskey and gorging on tacos just like anyone with interests outside of Netflix.

The problem is, I simply can’t sometimes.

Sometimes my disease forces me to stay home. It’s either I am in pain, or I am exhausted, and there’s not a damn thing I can do about it.

Trust me, I’d rather be out watching the Denver Broncos be SuperBowl champs, or catching the latest Leo movie. It is what it is.

It is what it is.

woman doing exercises for physical therapy in the pool
Mandy doing her pool therapy.

6. My disease is hard to explain.

I have an inflammatory condition that affects my joints, but WTF does that even mean?

The best way I can describe it is like this: Imagine you are wrapped from head to toe in a giant piece of cellophane wrap, burrito-style. The degree of tightness you are bound varies from day to day.

On some days, the cellophane is loose, so you are free to move.

On other days, it’s so tight that you can’t move at all, but that cellophane is always binding.

Over time, your body parts develop deformities because you are constantly tight.

Fighting the cello-phone all day long makes you super tired, and sometimes you’ll just want to lay in bed all day and stare into space. That’s what it’s like to have inflammatory arthritis.

I’m the cellophane-burrito-wrapped girl that walks kinda weird.

The only thing I can do is embrace my new normal and help other people who are struggling with their disease embrace theirs, too.

This is who I am…

… and I’m cool with it.

Are you?

This blog was originally published on Bliss and Health.