Listen to Chronically Ill People

As hard as it is to believe I am Disabled.

I know right shocker! (Emphasis on the sarcasm there)

The girl who is an ambulatory wheelchair user, uses other mobility aids (hearing aids, cane, bath board, etc) and has a medical history as long as twenty people lined up in a row is disabled.

However the one thing I find fascinating about my disabilities is that people around me will choose to say these things to my face:

"You shouldn't say you're disabled!"

"You are just special."

"Your body is just built differently. You are not disabled."

"Oh my god! I wish I was like you!"

"You're disabled?! Do you get free days out? You are sooooo lucky."

"I am so jealous."

"You're lucky just to get a lift pass."

"You don't look disabled."

"You shouldn't call yourself that. That is not a nice word."

"Have you tried Turmeric?"

"You should try Yoga that CURED my slight back pain."

Yikes...

Every time someone says one of these quotes please imagine my eyes rolling backwards towards Jupiter.

I know ignorance can be bliss to so many people, and sometimes the cause of these sayings are just lack of education. However none of these quotes are acceptable. Even if your Aunt Karen snorted Turmeric, drunk Kale juice and did yoga for a solid week and it cured her Sciatica. It is still not acceptable.

It's ablelism.

Like cool thanks, but I did not ask for your Miracle Cure Advice Book. I just asked where can I find the dairy-free milk.

I have been sick since I was two years old. If you are not familiar with my history or who I am, I had Neuroblastoma when I was two and now suffer with terrible side-affects from the drugs that put me in remission, as well as genetic problems.

During my treatment my family was subjected to peoples unsolicited opinions regarding my Nasal-Gastric Tube (which was keeping nutrition inside of my body), how pale I looked, why I was on treatment and many other things that I am too tired to list.

Once I went into remission, I suffered with problems that still exist to this day. However the symptoms I have are worse now than they ever have been.

These problems range from joint pain (I am talking like you have dislocated all your joints at the same time-type pain), Nausea (everyday), Migraines (yeah those) and Gastrointestinal Problems (stomach issues).

The problems I now have mean I have had to adapt my life around those. So I have had to buy mobility aids, ask for accessibility support and even take regular medication to try and stop the pain.

Spoiler alert: It doesn't but what other choice do I have?

And whilst retaining all of my integrity, kindness and strength I still get people giving their abelist opinions to me.

"Where is the proof?"

"Pfff. Stop it, you look so healthy."

"But you're pretty!"

"You really should not use those aids, they only exacerbate the problems."

"It is all in your head."

Sorry when did not being pretty get placed as a disabled trait?! I have met some beautiful disabled people, just shut up.

Having people I know, and even strangers say this stuff to me is damaging. Let alone to people who have not got any support.

I should not have to prove to Karen down the road why I need mobility aids. I should not have to prove I am disabled when it is as clear as day. The only reason I am in this mess is because people (doctors, not you lovely folk) refuse to take charge of my illnesses, leave me alone for months and then question why I am feeling this way.

Like hello, I still exist. The person who has been ringing your secretary for days asking for a closer appointment, because and I quote "feel like a truck has run me over twice".

You would not believe the amount of medical history, results and letters I have to go into appointments with, only to be turned away with no health plan or help. Nothing. Just left alone to go about my life the same way I always have.

Then add on these peoples' opinions makes me infuriated.

Let us just get one thing straight.

I do not care, or ask, for your opinion.

I am simply existing. I am a human being and if you come up to me thinking your opinion will help I can guarantee it probably will not.

If you see me using my wheelchair then start walking with my stick, that does not mean I am less disabled. It means I rested for a while and feel okay to walk for a while. It does not mean "I am cured". Or feel 100% better. Or do not need help.

My illnesses can never be cured. End of. Story over.

My illnesses are chronic, meaning they are here for the long-term.

They did not book in until Monday the 6th. Or go away because I am at the spa.

They are here to stay.

No amount of Pain Killers, Morphine, Turmeric, Yoga, Pilates or whatever can "cure" me.

And this is the same for everyone in the Chronic illness community.

Just because someone is wearing make-up, or wearing nice clothes, or walking unaided does not mean they feel better or are cured.

I can vouch for the people I know and say they and I will probably never get better. We just maintain the life we have.

And we make the most of the shitty days too. Lying indoors with the rain falling down a window with joggers on is my life. It is mildly enjoyable sometimes. I get my own snacks (not that I bloody eat them), hot drinks and a Netflix account that no one else gets to watch my shows on.

Yes I said that with pure glee on my face. I appreciate alone time just like you Karen.

I enjoy Netflix too I am not a weirdo, I just like Schitts Creek and being alone.

People like me are humans too.

We have emotions, trauma and baggage (physical as well as emotional) and sometimes we just need someone to listen. Rather than attack us with useless phrases or websites that can cure us. We want to just vent and have someone pay attention.

We don't want you to come up with advice, just listen to what we are saying and take it into account. Because otherwise we retreat away, and learn no one will listen to us.

I have slowly learnt to accept this is a part of me.

My Deafness, Tachycardia, GI Problems, Scars, appointments, phone calls and Joint pain make me who I am. If I did not have these Chronic Illnesses I do not know who I would be.

Probably boring.

Life if hard I know, but it is even harder for those of us who have had to fight every minute of every day trying to get Doctors and people to listen to us.

Just because my conditions are "rare" does not mean I am less valid.

I can be Human and still be Disabled. Those things do not make us different.

I am still me, even with the cane.

Just need a bit of help sometimes.

Molly-Tastic Treves