For this post, I wanted to recap my history with chronic illness and physical damage I am left with that is continuing to get worse.

Part 1

History Lesson 

Today, I am almost completely paralyzed from the knees down in both legs.  I can still feel, but that's about it.  I no longer "walk" (dragging my feet behind me while standing upright holding on to a walker for dear life) more than five to 10 steps with aids.  I can still stand on my legs independently, but I am much more comfortable holding onto an inanimate object for support/balance.  My lower legs are essentially heavy dead weight attached to the rest of my leg.

This did not happen overnight.  The unraveling of my legs' ability to operate normally (along with a laundry list of other issues) took place over a decade, which part of occurred even before I knew I had multiple sclerosis, the cause of my physical decline.  

I know now I was diagnosed with multiple sclerosis when the disease was almost done wreaking havoc on my body.  After multiple sclerosis became inactive in 2015 (diagnosed in 2012), I was left with a substantial amount of nerve damage in my brain and spine. No one knew what that would mean as far as physical decline, so I did EVERYTHING you could possibly conjure up that could have helped me.  

I do believe some things did/do help like exercising, healthy eating (not 100% of the time 😋), and constantly working on my mental well-being kept me going as long as I have without completely dropping out of life.

Hindsight taught me a lot and the good news is, I am NOT the reason my lower legs do not work, multiple sclerosis is.  That also means the reason I am the way I am physically is not because I eat gluten, do not take medication, did not do the right exercise and so on.  There is no cure for nerve damage/spinal cord injuries.  There are tons of scholarly articles and trials, but year-after-year, I keep hearing about the same old things and new promising discoveries with nothing coming to fruition.

Incidentally, I no longer identify as having multiple sclerosis.  I only identify as a person living with extensive nerve damage (caused by multiple sclerosis that has been inactive since 2015). 

If you are like me, I had no idea being paralyzed meant so many different things and how no two people who use a wheelchair are the same.  On that note, here are three versions of me with almost complete paralysis in both lower legs:

Wheeling

Working

Standing While Exercising

Part 2

These are the beginning of the phrases that have been said to me, have been plaguing me for years, and why they are not supportive. I am sharing them in hopes it helps even one person make an experience better for someone going through something difficult.

1. Maybe you have/don't have __________.

Personal to me, maybe just maybe, but the fact is I have hard evidence and more than three neurologists say I have multiple sclerosis and extensive nerve damage, so you can see how odd and quite honestly offensive it is when people suggest I have something different wrong with me since I am not like them/other people they know with multiple sclerosis.

2.  It could be worse.

Friends, it could be worse.  Pretty much anything you have going on could be worse.  If a teenager breaks up with their significant other, do you think they are comforted by the phrase, "It could be worse."?  No, there is no comfort in those words, so why is it okay to let me know as person who uses a wheelchair is that it could be worse? (the wheelchair is the good part anyway)  Perhaps, stating you are sorry and here to listen would be more comforting.

3.  Well, but, at least __________.

• Well, but, at least you have a spouse who cares about you.
• Well, but, at least you have the ability to pay for things.
• Well, but, at least you can still get to the toilet.

These phrases are hurtful and guess what, I am still changing, so things I do today, I may not be able to do tomorrow.  Once a fellow wheelchair user said, "At least you can still walk" and less than a year after that I could no longer walk. The words stuck even after the ability left. 

4. I bet your job and life stresses caused your physical damage.

Nothing, I mean nothing makes a person with disabilities/chronic illness feel worse than hearing other people essentially blame them for how they are.

5.  You are NOT the ONLY ONE with problems.

That's true.  I am not, but telling me that does nothing.  It's incredibly invalidating.

6.  Have you tried __________?

Your eyes would bleed reading a list of everything I have tried to help myself. It is kind to think of me, but unless you have a proven solution for healing nerve damage, you are likely telling me about something I already tried.

7.  I think you should consider therapy.

Gaslighting has become something that happens to me regularly (even if its unintentional).  I am always in favor of therapy if you want/need it.  However, because I have feelings and express them in a healthy way to me means I am doing well.  I am not depressed or angry and cope very well with a very serious life changing disability.  I am not sure why this phrase is said to me.  I suppose it is because I should not feel bad/express how I feel about what has happened to me and that feels like gaslighting. Note:  It also does not help that I am an introvert, like being alone, and not going places.  This does NOT bother me, but it seems to bother a lot of other people who think the way I CHOOSE to live is unhealthy.

8.  Can/Does she __________?

Yes, I am still invisible, stupid, unable to talk and you name it.  I have had this wonderfully kind phrase uttered to people with me almost every single time I go anywhere.  I may speak to a restaurant host/driver/store clerk at the start, they typically respond to me one time and then address all other comments and questions to NOT ME and they ask the person or people with me if I like something/can do something.  It's so weird especially when I have already spoken and shown that I am not invisible.