Wrong
Being in a body that cannot build itself properly because it doesn’t make collagen or Tenascin X (maybe both) correctly is frustrating for so many reasons.
But what’s even more frustrating, perhaps, is dealing with well-meaning people who know nothing about Ehlers-Danlos Syndrome (EDS). What happened at the local grocery shop today is a prime example.
Obvious
It was obvious to bystanders that I was in significant pain because I had my manual wheelchair (which I rarely use outside my house due to self-propelling being so painful for my hypermobile joints) and, when I had to stand to reach items from shelves and refrigerators, I struggled.
Lifting and carrying heavier items like milk and bottled water was difficult too. When I got to the till to pay, I was greeted by a staff member I often chat with.
They are kind and well-meaning. I want that to be understood. They’re usually easy to deal and interact with.
Yesterday, though, took a lot of self-control.
They’re used to seeing me in various amounts of pain.
Obviously, they’ve never seen me when my body is at its worst because in those times, I am unable to leave my bed, let alone my house.
They asked how I was and I replied that I was hurting, but not as badly as I had been the week before.
In the recent past, they’d been had to use a stool to sit behind the counter as their back was hurting. A transient issue, they recovered and were back to their usual pain-free self within a few days.
When speaking about their discomfort, I’d expressed empathy, saying I’ve had constant daily, worsening pain every day of my life since I was twelve years-old and my HEDS had become symptomatic.
They were shocked.
It must have stayed in their mind, been something they’d thought about, because on this visit to the store, while scanning my items they told me “I think you need to talk to a doctor about your pain.”
Smiling, I replied “I have. Many times. It’s the nature of my conditions. There’s nothing that can be done.”
“There must be something doctors can do,” they insisted.
“Some medical conditions can’t be fixed,” I shrugged.
“I still think you should speak to someone,” they continued.
“I have,” my pulse started increasing with annoyance, but I remained outwardly calm, not wanting to offend or upset a person I know means no harm. “There is nothing that can be done.”
“I don’t believe that,” they pressed on. “You need to talk to a doctor.”
“I’ve seen three internationally respected specialists, and right now I’m using medication 100 or so times stronger than morphine, as well as oxycodone and co-codamol. Pain meds are less effective in bodies with this condition. Sometimes we just have to accept that nothing can be done.”
I hoped my words would end the discussion.
They didn’t.
“I still think you should try talking to someone.”
It didn’t matter what I said.
This person, with no idea what EDS is, thought they knew better than three of the most renowned experts on this planet who I have seen several times over the last 25 years, thought they knew my body better than I do.
Dismissing my words, their repetition continued, which is frustrating for a few reasons.
Invalidating
Firstly, this person wouldn’t know how to spell Ehlers-Danlos if they were asked to, they certainly don’t possess any amount of knowledge about it.
They don’t know how severe my case of HEDS is or the numerous other conditions it has caused.
They know nothing about my medical history or me personally.
Why they feel able to tell me what I ‘need’ to do medically speaking is beyond my comprehension.
Secondly, this kind of conversation is belittling, patronising and dismissive. It signals that the person speaking does not trust or see value in things I said. The connotation of their words is that I could try harder to get treatment, that I have not tried hard enough to help and heal myself.
It strongly implies that I’m choosing to be in pain.
I. Have. Fought.
Until there was nowhere
else to go.
In most cases of severe EDS, and certainly in mine, this couldn’t be further from the truth.
I have fought for treatment for years. I have spent decades researching EDS and its comorbid conditions, amassed so much knowledge that I can, sadly but confidently say there is not a doctor or consultant in the whole of NHS Wales who knows as much about the condition as I do.
I even met with the Medical Director of my NHS Trust to discuss my situation, along with the wider lack of EDS care in this area.
I. Have. Fought.
Until there was nowhere else to go.
The final and maybe most frustrating part of conversations like this is that people who insist that they know what we need to do is that it leaves us unheard.
Their refusal to accept what we’re saying may be born of kindness, but the implicit accusation that we have not tried hard enough to get help with our pain diminishes the struggles we have faced.
It minimises the mental toll chronic, incurable conditions create.
This kind of conversation is founded and dependent upon the concept that we must try harder.
It takes many tears, much sorrow and facing huge amounts of fear to finally come to a place of acceptance.
Accepting your body is permanently unwell and will only continue to deteriorate, accepting that your life will become increasingly limited, increasingly painful and difficult is a long and desperately distressing process.
A process that has no end.
Why Should I?
Having those who are essentially strangers say what they think you should do when they know nothing about your illnesses can make a bad day worse.
Some people would say “Just don’t let it get to you,” which is only further invalidating and shows lack of emotional intelligence on their behalf.
These conversations are not unique. They are not a one-off occurrence.
They happen repeatedly.
Just when we have come to a place of acceptance, we have to face and debate strangers who are unwilling to accept what we say.
Admittedly, with that local shop staff member, I could have simply nodded, told them they were right.
But why should I?
Why should I do that when doing so means I’m telling this person and others like them that their lack of knowledge and their implied conclusions, the implications that I have not fought hard enough, are correct?
For my own peace?
Saying nothing and falsely telling them they’re right would only sit more heavily inside my mind.
No.
I refuse to do that.
I refuse to reinforce a false knowledge in other people’s heads because I have fought too hard and for too long.
I will never concede in order to appease those who don’t
even know enough to know when they are wrong.
