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Dealing with Being Chronically Ill

Struggling. Tired. Scared

As someone that suffers from Ehlers Danlos syndrome you deal with constant effects of not being able to do what someone who is able bodied can. The moment my diagnosis came was the moment everything practically went to shit. I was unable to walk far, I wasn't able to sit down for long and the majority of the time I had to stay in bed in the mornings in order to get my legs and hips in the right position. 

I've noticed that once you have an official diagnosis and people are aware of that, opinions and perceptions change. What people don't seem to understand is yes we have a disability but NO we do not want to be treated like we do and we certainly want to be able to regain our independence so if you frequently point out to that person all the things that can happen because of their condition, self doubt is a powerful thing and that will definitely affect them when the time comes to trying to gain your independence back.

Now being a Law student after making a big change from medicine, I am trying to somehow get myself back into the rhythm of doing things for myself but obviously it's not easy as having a chronic condition your days are never the same as each other. One day you're feeling fine and the next like me you have a dislocation setting you back five days—meaning no movement for five days and then you have the recovery time.

You are your own person and you are the only person that knows what you can and can't do and if someone is trying to convince you otherwise block them out because negative energy is something we definitely don't need.

It's hard enough to accept that you have to alter and make amendments to the way you live your life without needing to have someone constantly remind you what your disability stops you from doing.

It's 2019 and I thought that once I had stepped into adulthood that everything would just "click" but that's not the case. I have constantly tried new things and I had an idea of wanting to be successful in something but I still have no clue what. I've never been good at anything really so as a girl that rarely shows her emotions with people or hardly ever opens up, I thought why not try something that means something to me.

Being chronically ill means not being able to do the same thing someone able bodied can. Being chronically ill means struggling to be able to do the things you probably love to do.

Trying to convince yourself you're able. You're not.

The harsh reality that you're not.

The amount of times I've tried to sign myself up for the wildest things and the craziest things. It never seems to work. My plan never works. 

I've tried to convince myself not to limit my greatness, not to limit the possibilities that are out there in the world but I can't. I just can't. 

I'm struggling to find something that's fine for me. That is just for me. Something that no one can take away from me. 

I'm tired of having to restrict myself from taking part in activities that I used to glide in with no troubles. The activities that now turn my legs into wood. That now cause me to collapse at the slightest hurdle.

We try so hard to be able to be at one with ourselves. We want to be accepted. We need to be accepted. We don’t want pity. We want equal opportunity.

Why can’t we get that?

I'm tired.

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Dealing with Being Chronically Ill
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