Previously Undiagnosed - Healthy Way to Deal with the Past
I wasn't diagnosed with HAE until my 30s but I have had attacks my entire life.
It's fairly common for a memory to pop up where now I can recognize my HAE was a major factor with what was going on. These are also often associated with those in health care or my family treating me really unfairly, considering. Pain being invalidated, the fatigue ignored and I was treated like I was lazy, being blamed for wanting to get out of things, basically really serious stuff being treated as if there was nothing wrong with me or it was a really minor ailment and I was overexaggerating things. Reality was I was pushing through way more than what I should have been, I should have been getting emergency treatment and resting.
I'm not sure what is healthy for dealing with these thoughts. Just say that's the past, nothing I can do now so just carry on with the present? Or are these thoughts something that I should be working through in some way?
Can anyone point out any resources for this type of thing? I know this is fairly common, although varying scales depending on the condition. I haven't come across any information about what to do about this once that diagnosis is there though.
@AffyAvo
can't find a definition of HAE. Help?
@DavidEss I suppose: https://www.haea.org/HAEdisease.php
This UK site seems to be down at the moment: https://www.haeuk.org/
Charlie
@RarelyCharlie
Thanks for taking the time.
I came across that definition, but thought perhaps there was another HAE more mental health related. I should have mentioned it in my question, apologies.
@DavidEss That's exactly the point, I think—to what extent it's meaningful to consider painful memories of being treated unfairly as mental health related. I had a look for information at the time this thread was posted but I found nothing useful to report.
My feeling about it is that it standard treatments for PTSD might possibly be helpful—that is, imaginal exposure or EMDR within a CBT framework. And the question of whether an actual diagnosis of PTSD makes any sense would be kind of academic. I suspect that diagnostic criteria for PTSD are not met, and the treatment would be "off label" so to speak. But that's only my feeling and I have no evidence for it.
Charlie
@RarelyCharlie Thanks.
Not necessarily as being treated as mental health related (although that comes up too) - but it's a range, from suck it up there's nothing wrong you're trying to get out of doing tasks you're responsible for, to just really minimizing a symptom ie. assuming a kid with a severe migraine actually has a minor headache, to putting it onto mental health problems, whether that's fully a disorder or just psychosomatic 'stress' symptoms.
I really wouldn't have considered PTSD treatment, that's interesting. I don't have flashbacks (or at least not specifically related to this, I've had some nightmares similar to flashblacks related to HAE and medical stuff that happened after my diagnosis). Some of the similarities are certainly there though. A little things can bring up a memory of an example that I haven't considered since being diagnosed, as there are likely 1000s of them. Not all of them are even big things, but put all together it certainly affected me.
@DavidEss I'm curious why you were looking for a mental health connected definition for HAE? I brought up pain, fatigue, and needing emergency treatment.
I also know people who have experienced similar issues due to migraines, IBD, celiac disease, etc.
@DavidEss RarelyCharlie got the right one.
@AffyAvo
@rarelyCharlie
I have to admit that I searched for hae as soon as I saw it, and before reading the rest of the post. That will teach me - of course it's clear from the rest of the post what you meant.
In my defence I was picking up a post from some time ago, and frequently the op doesn't respond.
Treatment for PTSD is just good treatment actually. It may be a bit of overkill, but tbh if you have been ground down by this for a while then, yes, it counts.
Emdr doesn't have to be delivered within a cbt framework btw, although that's the way it's done in the NHS in the UK. Standardise it, manualise it and eviscerate it, as IAPT are discovering. Originally it was a yoga technique for spiritual cleansing. Last I heard Ms Shapiro was wanting you to have a masters before learning about it.
Fortunately my wife was a yoga teacher so I knew all about it before Ms Shapiro publicised it.
Another technique you might try is Meridian Therapy. Plenty of youtube videos on that.
I just got diagnosed with Muscular Dystrophy (Limb-Girdle Muscular Dystrophy Type 2J/Tibial Muscular Dystrophy) about a week ago.
We haven't identified the correct type yet, but my doctor tested my parents' genes for a carrier test, and managed to identify the mysterious disease I had for two years. I have inherited a recessive genetic disorder, and I inherited two copies from my parents who had a defective gene. I have 10+ mutations that are considered significant, but the gene TTN (Titin) is the major problem to my disease, causing a form of Muscular Dystrophy.
If I am considered to have Limb-Girdle Muscular Dystrophy, my type (2J) is considered to be 1 in a million people.
Previously, we have went to 7+ doctors, with no avail. We suffered a lot, and this caused our family to have massive fights and heated discussions. Some doctors told me to stop "bothering my family" so that my family will be lifted from the financial burden to take care of me. They assumed that I was faking my MD, and they told me to "get over it."
I think the best way to get your diagnosis is to understand your symptoms first. I keep a small diary/agenda to keep track of my illnesses. I also keep track of how my disease progresses and how my muscles atrophy, because MD is a degenerative disease. If you are suspecting a condition and if it is a rare disease, there are two major portal sites regarding rare diseases:
Orphanet: https://www.orpha.net/consor/cgi-bin/index.php
OMIM: https://www.omim.org/
There's a lot of medical words involved in these two sites. Orphanet is a little bit easier to navigate, and OMIM includes many scientific researches involved.
I hope that, if you are struggling with misdiagnosis or not being diagnosed properly, you will find your answer soon.
Also, if you feel like your body is going into danger or you are getting sick more, please see a doctor. Please do not wait long like I did.
Stay strong everyone!
Michelle
@involuntaristua I'm not questioning my HAE diagnosis, now that I have it I wonder the best way to proceed when memories pop up from times prior to my diagnosis.
@AffyAvo
It's good that you're quite firm on your diagnosis!
You got this. I'm really proud of you.
