Sometimes I feel like an imposter.

Sometimes I feel like an imposter. Sometimes I feel like I don’t belong here, like I cheated someone to be here.

When I was a child I had a series of series of seizures coupled with extremely high fevers in a span of about 3 weeks. I was given Last Rites 2–3 times, and my parents were told to “get things in order”. When I survived the last seizure but was left unable to use my limbs, doctors told them that “that was as good as it would get- the damage was permanent”- and they said would “probably affect me cognitively” They thought I would be blind and in a wheelchair with little to no hope for recovery.

This was in 1995. 23 years ago. I was 5 years old.

I spent 2 months in a wheelchair. The right side of my body was worse than the left. There was muscle spasticity and tremors that severely affected my right arm and leg. Then my body began to heal. I gradually regained control of my left side first then the right.

I began walking with a walker and leg braces roughly 6 months from the start of the ordeal, graduated to braces and crutches at 7 months and just one brace on the right leg at 9 months. Finally at 11 months I was able to get rid of the brace all together. I was 6 years old

I still had to relearn to read and write all over again. I learned to read, write and do math at a first grade level by the time I entered preschool. After the seizures, I had to relearn everything. I caught up with reading fairly quickly. But writing was a different story. I couldn’t functionally write again until I was 8 years old. I had a fairly severe tremor in my right hand and it prevented me from grasping anything in that hand for any length of time. Gradually I regained the ability to write but the effects are still there. My penmanship is “doctor- level scrawl” at best and I don’t posses the ability or the fine motor skills to write in cursive. I can control the tremor long enough to sign my first and last name but anything longer that is next to impossible.

I still walk with a slight limp and a have shaky hand that most people attribute to nervousness or something similar. But behind the scenes I have significant lower back, hip, shoulder and leg pain as well as weakness in those areas.

If you and I met, you probably would never guess any of this.

But… its true.

Which brings me to the imposter part:

I’m not technically disabled. I can function well enough to live my life but I don’t quite fit neatly in the non-disabled category. 
But I also have some significant physical deficits- but because I can function in society with out accommodations I can’t identify as a person with a disability either.

I know there are a lot of people who would give anything to have my “problem”.

and believe me I’m really not complaining. I know I’m lucky. I know things could be worse. Way worse.

Its just….

Its exhausting.

Just the other day, at work, I complained that I was in pain and I had 3 women 10–15 years my senior jump down my throat, saying that I didn’t get to complain because I was too young. My pain was invalidated because of its invisibility and my age.

But if I still walked with a leg brace and said my leg hurt, no one would think of saying anything to question me.

I guess it boils down to this:

My suffering does not invalidate your suffering. Its not a race of who has suffered the most misery.

Everyone is fighting a battle you know nothing about. Let’s try kindness first, and see how far that can carry us.

I have Lupus. How not to piss me off. A tutorial.

If you couldn’t guess by the title, I have Lupus. Granted its pretty mild, compared to others. If I we met and spent time together, you wouldn’t be able to tell at first glance that I am not as healthy as I look. Trust me, that is just fine with me.

BUT…

BUT- if I do disclose to you that I have this disease, please, please do not offer me your favorite home remedy (I already drink enough tea to drown a horse.) or ask me if I’ve really been diagnosed or if I “just think” I have it because I don’t look sick enough. Also don’t tell me what medications I should be taking because someone you know took it, and responded well. Chances are I have either already tried whatever medication you are suggesting or I can’t try it because of other medical interactions or side effects.

In short- unless you are one of my doctors: you don’t know what works for me, what doesn’t work for me and what I’ve already tried.

Even though this disease is on the mild side that doesn’t mean it doesn’t affect me. Chronic pain, Chronic Fatigue. Increased chance of infection. Increased healing time after injury or illness to name a few.

Let me just say this: I am usually really open with people about this condition. Everyone I work with knows I have it but I don’t broadcast it. If it comes up in conversation- then I let it. I have an open discussion about it. The majority of people are super respectful and genuinely curious, but I had an experience the other day where a coworker and I were chatting and the topic came up. I mentioned that I get sick more often because I have lupus. She responded by asking me if I’ve actually been diagnosed or if I just Googled my symptoms and that’s what I think I have.

I paused for a beat, dumbfounded at the disrespect, I icily replied “No I was diagnosed 7–8 years ago by multiple doctors and a lot of blood work.”

Undeterred, she told me that her daughter had lupus years ago and took magnesium supplements and was cured. Therefore I should take magnesium or maybe I just enjoy the tragedy of having lupus.

Fuming, I replied that I also have a condition called hypoparenthyriodism. Its a condition where the body cannot regulate blood calcium, magnesium or phosphorus levels. The calcium levels are too low and the magnesium and phosphorus levels are too high. therefore I can’t take magnesium supplements or else it will push them higher. But I do have to take 8 calcium pills everyday. Its a lot. Somewhere in the ballpark of 4,800 mgs.

She responded by saying magnesium is what makes calcium work so if I took that I wouldn’t need to take as much calcium per day. I reiterated that I literally cannot take anymore magnesium because my levels are already too high. and there is magnesium in calcium supplements as well.

She made an audible sigh and rolled her eyes at me. I tried to let it roll off my back but its been bothering me.

This woman is not a doctor. Even if she was- she’s not my doctor- nor was I asking for her advice.

In short- Just be respectful. Everyone is fighting a battle you know nothing about. Lets try kindness first and see how far that can carry us.