You never get used to it...

“Well you have to get used to it at some point”/“aren’t you used to it yet?”. Medical professional often use this as a reason not to use symptom management because “if it’s chronic when will you come off it”, or as a reason not to provide accommodations, access needs or support because “when will you learn to live without it”…

And it gets said by others, friends and family too, often because they are bored of hearing about our illness or supporting it. Or even with the best intentions just frustrated we aren’t better and this thought will help them. The “surely it’s got easier to live with though” or “you can’t still need that support”. It comes after the “are you better yet?”. 

Chronic illness is exactly that, chronic. But it’s not the type of symptoms subtly lingering in the background that you can forget. You don’t get used to the debilitating nature of symptoms, at least I haven’t. The longer it goes on the harder it can be to cope for me.

Yes to some degree I have physically adjusted to my symptoms. More so that my body uses less energy for its reactions. My symptoms are still the same, it was horrible then and is horrible now. 

My body has adjusted to living in the dark, I don’t realise why others struggle to see in my room but I’m not used to the light sensitivity, the pain of it or the fact that I have to live in the dark. 

I’m used to it, in that I don’t remember what it was like to be healthy, to be pain or symptom-free. 

But I am not “used to” my symptoms in that the effect has gone. Not used to how relentless the PEM is and how it hits like a brick wall. Or with how much the illness fluctuates and my symptoms change day to day. In a flare, I can forget how my baseline felt after so much time and how endless it becomes, just like I’ve forgotten my healthy body over the years. I’m not used to this illness and its symptoms, and I’m not sure I ever will be.

The people who don’t want to provide long-term accommodations for chronically ill and disabled people are often the ones who expect the same accommodations for their short-term symptoms. 

Why do they think it’s so easy for us to get used to our symptoms? 

Is it because we carry it well? Or that it’s invisible to them? Or is it to make them more comfortable with our suffering? 

Would those people with acute symptoms get used to it if their symptoms became chronic at the same level of severity? Or do they just get used to ours and are impatient with our access needs? If only they knew…