Is there somebody in your life with weird health problems that you don't really understand?
Let me tell you a little more about the process of becoming chronically ill:
1/
Let me tell you a little more about the process of becoming chronically ill:
1/
https://twitter.com/bennessb/status/1160922221835096064
Stage 1: Alarm
When you first realize that your symptoms aren't going away on their own. It may happen dramatically (with an ER visit) or gradually (nagging discomfort).
Many people will get into wellness protocols at this point: diets, supplements, exercise, more sleep.
2/
When you first realize that your symptoms aren't going away on their own. It may happen dramatically (with an ER visit) or gradually (nagging discomfort).
Many people will get into wellness protocols at this point: diets, supplements, exercise, more sleep.
2/
Stage 2: Symptom Validation
This is when you start pushing your PCP to investigate (which can be difficult). Many people will be given a mental health dx or referred to therapy at this point, at the expense of further investigation.
You wonder if it's all in your head
3/
This is when you start pushing your PCP to investigate (which can be difficult). Many people will be given a mental health dx or referred to therapy at this point, at the expense of further investigation.
You wonder if it's all in your head
3/
If you're financially & energetically able to be persistent, you go through many different rounds of diagnostic testing, and your doc might tell you that it's good news when tests come back normal.
Slowly, your chart will fill up with the medical names for your symptoms.
4/
Slowly, your chart will fill up with the medical names for your symptoms.
4/
This is a really important part of stage 2:
It's possible to spend years or decades with validated symptoms but without a diagnosis.
If somebody is stuck in this stage, it does NOT mean they are faking or exaggerating or malingering.
It DOES mean that they need support.
5/
It's possible to spend years or decades with validated symptoms but without a diagnosis.
If somebody is stuck in this stage, it does NOT mean they are faking or exaggerating or malingering.
It DOES mean that they need support.
5/
Stage 3: Diagnosis
If you've never been through it, diagnosis probably doesn't work the way you think it does.
People often begin treatment during phase 2 because lots of meds are symptom specific rather than diagnosis specific.
6/
If you've never been through it, diagnosis probably doesn't work the way you think it does.
People often begin treatment during phase 2 because lots of meds are symptom specific rather than diagnosis specific.
6/
So while a diagnosis often validates your experience for other people (and may improve your eligibility for benefits), it may not have any impact at all on your treatment or prognosis.
Plus, a lot of folks with chronic illness will get different dx'es from different docs.
7/
Plus, a lot of folks with chronic illness will get different dx'es from different docs.
7/
This is especially true with clinical diagnoses like ME, fibro, chronic Lyme (the controversy there is beyond the scope of this thread) and hEDS.
But autoimmune diseases are also often misdiagnosed or conflated, which is why a patient's story might seem like it's changing.
8/
But autoimmune diseases are also often misdiagnosed or conflated, which is why a patient's story might seem like it's changing.
8/
The most important thing I want to say about diagnosis is that if you know somebody who's been recently dx'ed with a chronic illness, don't assume that they recently became chronically ill.
They've been chronically ill since stage 1, which may or may not be recent.
9/
They've been chronically ill since stage 1, which may or may not be recent.
9/
So don't assume that a diagnosis is bad news.
It might be bad news. But it might be a relief to finally get an explanation. Or it might be neutral because it has zero impact on your treatment or quality of life. It's okay to ask a loved one how they feel about diagnosis.
10/
It might be bad news. But it might be a relief to finally get an explanation. Or it might be neutral because it has zero impact on your treatment or quality of life. It's okay to ask a loved one how they feel about diagnosis.
10/
Stage 4: Effective Treatment
Like I said before, treatment often begins at stage 2. Though for lots of people, diagnosis can open the door for new protocols.
But efficacy is a relative term, and it can change with time.
11/
Like I said before, treatment often begins at stage 2. Though for lots of people, diagnosis can open the door for new protocols.
But efficacy is a relative term, and it can change with time.
11/
Insulin is an effective treatment for diabetes because it helps a patient manage blood sugar. It's not a cure for diabetes because it does not stop the immune system from attacking the pancreas.
If it weren't for insulin price gouging, it would be pretty straightforward.
12/
If it weren't for insulin price gouging, it would be pretty straightforward.
12/
Remicaid can be a pretty effective treatment for Crohn's disease. Some people get a lot of their quality of life back. Some people don't get any relief with remicaid. Some people get temporary relief but eventually need to start new protocols.
13/
13/
There are no standard protocols for ME, so some people experiment with lifestyle changes, off label drugs & new diagnostic testing to look for another rarer explanation for their symptoms.
If someone isn't getting better, it doesn't mean that they're not doing their best.
14/
If someone isn't getting better, it doesn't mean that they're not doing their best.
14/
Effective treatment also doesn't always mean that your life will go back to normal. It might mean bringing your pain levels from 6 to 4. It might mean that you prioritize rest so that you can reliably have 2 functional hours most days. It might mean that you're able to work.
15/
15/
Effective treatment does NOT mean that you can stop thinking about your illness.
Sticking with a protocol requires time, energy and money, and it also takes up a ton of cognitive overhead to stay on track and monitor any symptoms for a possible relapse.
16/
Sticking with a protocol requires time, energy and money, and it also takes up a ton of cognitive overhead to stay on track and monitor any symptoms for a possible relapse.
16/
Stage 5: Cure
This is... typically not a thing with chronic illness, which is why I want to talk about it.
Penicillin is a cure for syphilis. Insulin is not a cure for diabetes. Remicaid is not a cure for Crohn's.
Effective symptom management is not the same as a cure.
17/
This is... typically not a thing with chronic illness, which is why I want to talk about it.
Penicillin is a cure for syphilis. Insulin is not a cure for diabetes. Remicaid is not a cure for Crohn's.
Effective symptom management is not the same as a cure.
17/
This is long and obviously not everyone's experience is exactly the same. Some people are diagnosed very quickly and some people find a really effective treatment right away.
But here's why I'm talking about it: we need support & accommodation at every stage.
18/
But here's why I'm talking about it: we need support & accommodation at every stage.
18/
If somebody you care about tells you that they have access needs or boundaries to protect their health or whatever else, believe them!
Needs and boundaries have nothing to do with diagnosis. Diagnosis is not the border between real sick people and fake sick people.
19/19
Needs and boundaries have nothing to do with diagnosis. Diagnosis is not the border between real sick people and fake sick people.
19/19
Yes to all of this! I didn't talk at all about comorbidities & the ongoing process of acceptance and identity in this thread but they are biggies.
https://twitter.com/librariankqm/status/1161355828550615040?s=20
RemiCADE. I wrote this at the gym and I don't have crohn's. Thank you for not maliciously correcting me dear twitter friends.
• • •
Missing some Tweet in this thread? You can try to
force a refresh
