A rant on chronic illness treatment
I gotta let it out, man. I've got IBD.
I believe that those with IBD (and any other CI really) need more attention, help, and advice.
My experience hasn’t been a good one.
Between a mix of false promises, and a lack of communication, the truth shone bright despite the easy comments doctors would throw my way.
“You’re in good hands now”
Is a sentence I can’t seem to forget, as I span over the last few desperate years, full of medical neglect.
Those hands would never pick up the phone.
“There are many options for treatment, it’s going to be ok”
At the beginning of my journey, only to be under-treated.
The strange ease and confidence that I was presented with at times, was trickery at its finest.
That is not to admonish all health specialists in gastroenterology, however, looking back… it appears we are still not taken seriously enough.
As a result of our chronic condition(s), I think we can become so accustomed to any pain and discomfort, that tracking it can be difficult. Expressing the truth of our condition can become hazy, almost illusory.
What a 7 in the pain chart for a typical person is, turns into our 4 at most.
When we only know odd sensations in our abdomen, we cannot track any real changes or state to report.
How can we differentiate and state a case to a doctor, when we have already told them. From the beginning.
Health professionals seem to be stuck on looking for changes and differences - yet it simply IS different and unusual - RIGHT NOW. Existing as is.
I feel that specialists are almost tricked by the consistency of the chronic ailments, as well as us.
They become so used to the idea that this is just how it is going to be, that they almost give up on seeking the best option: to be symptom-less.
They forget that their patient is a human, in pain and shame.
It might be ok for them to simply try and maintain an equilibrium, or to have a faint hope of remission. But for us, we are living through the physical frustrations that they are ok to leave as is. As long as it isn’t extreme. As long as it’s not so cruel that we drag ourselves to urgent care.
I don’t want to be hateful of health professionals, as many are honestly angels sent to earth, in my opinion.
Personal experience has shown me the other side of that, though.
And I have to let it out. Otherwise, I will wake and think about what they said to me, every day.
They’re supposed to specialise in our condition yet seem to fall short, and lack a human touch. They phone to ask interview type questions, and never want to know how it’s affecting you.
Even then, it’s almost as if they want to shunt off the responsibility of you, to another colleague.
At most I was asked if I had someone to talk to. I was lucky I did.
“Please be someone else’s problem” is something feel, lurking in the background of our conversation.
Again, we have to live with the condition, yet others seem terrified of handling it with us.
A GP asked me “What do you want me to do?”
As if I had all the answers. (Home skillet, Idk either)
I sensed fear in their tone, and defensive behaviour, while telling me they couldn’t help.
They were scared to touch me. Too much responsibility. Too scary.
Surgeons helped me the most, after a long battle over years with the pain, and the stress, and the fear.
After failed attempts at managing it and large spaces of no communication from my “team”, my condition had spiralled. It had gone too far, and I was in notable agony.
Complications had happened, and drastic measures were necessary.
It had been missed. I had been so used to pain, that it confused me. The nurse I was speaking to was either so desensitised, or so overworked, that they didn’t clock the signs of infection.
It was obvious. I told them repeatedly I had fever symptoms, and even asked if it was a common thing in flares.
I think about that often.
Sheepishly, they visited me once in the hospital they worked at. They admitted to one failing, and I foolishly pretended to be friendly.
Reminded of half of what got me into this trouble: Not being a b****.
So what to learn on your part in your journey with this condition?
BE A B****.
Tell them if they’re not being helpful.
Tell them if you don’t feel listened.
Get second opinions.
Annoy the heck out of people.
Never shut up.
Even if people roll their eyes when they talk about you, at least they’re talking about you and noticing you. Better that than being a wallflower they forget about.
If something changes without communication, follow them like a hound and always ask “why?”
GET THINGS IN WRITING
Ask questions in writing too.
Ask for documents, copies of information that regard you
Thank you if you read all this.