SLE diagnosis, potential PTSD

[Bossingit]

I was diagnosed SLE last year. Recovery and getting on meds was going pretty well, returning to work etc.

more recently I’ve returned to counselling due to a decline in my mental health. After about a month of sessions my counsellor started mentioning PTSD and has asked me to fill in an assessment, it’s scarily accurate. Is this something others have experienced?

[Bossingit]

Hi, thanks for taking the time to reply. I understand that PTSD can potentially influence the onset of lupus. However I don’t believe this is the case for me. While I know lupus does not directly cause PTSD, I do understand that the events, the trauma, with a chronic illness, it’s diagnosis, it’s treatment and the impact on everyday life has been know to be a trigger.

I’m looking for any experience people may have had of this.

Thanks

[StriatedCaracara]

I'm not sure if there is a single assessment or a single definition for PTSD.

One thing I'm more sure about is the poor way we sometimes get treated is bound to make us behave differently when dealing with health care services.

This is not due to a flaw in our mental health, instead it is due to us thinking clearly about situations and not wanting to engage in situations where it is likely we will be hurt further.

We can be affected so much by the actions of others. The health services we use we hope would increase our wellbeing - like you I have related more to the opposite happening...I'm not sure what to call it though, and don't want to be labelled, as then even more harm could be done ..🫣

Hope things work out well.

You could have some interesting conversations on this and ask the therapist why they are doing the assessment and what they hope to gain from it.

Thanks for posting.

Looking forward to hearing responses.

Important subject.💯💐🌸

[Amakura in reply to StriatedCaracara]

Apologies for misreading your post, and I've deleted my contribution because I'm conscious of not misleading potential readers from your crucial topic. Hope you find the advice/experiences that you require. Sending you loads of healing

[Bossingit]

Totally get the label thing. Another diagnosis… no thank you!

I’m reluctant to do the assessment and would rather the focus be on processing the “trauma” and living with the diagnosis.

Thank you for the response.

[MusicalFurbaby]

Absolutely! The trauma of living with chronic illness is real. Lupus, in particular, has a randomness to it that can be quite scary, and flares can at times seem life-threatening. So there is certainly potential to develop ongoing trauma-type responses.

Have you heard of Enduring Somatic Threat (EST)? It’s the type of threat people with chronic illness experience, ie. threat that lives inside your own body, from which escape is not possible. EST is different to other types of more common trauma triggers: violence from others, natural disasters, car accidents—these all take place outside our body, and there are ways of gaining distance from them (to some degree). But with EST, there is no escape. It’s a very specific kind of trauma.

Trauma is possible any time we experience direct harm or the threat of harm (including near misses), or witness it happening to someone else. I think lupus flares, especially severe ones, have the potential to tick that box.

It’s different for everyone though. What’s traumatic for me may not be traumatic for you and vice versa. What is important is to work with your counsellor on the trauma symptoms: not necessarily by unpacking the gory details, but by focusing on how to cope with the present moment, how to limit the what-ifs about the future, and how to hang on to reasons for living. Remember, you’re not alone. We’re here for you 🌻🌈💚

[Chris21 in reply to MusicalFurbaby]

I’ve not heard of EST but I shall now look it up! My daughter has diabetes, coeliac and sjogrens and what you describe sounds just like what she tries to explain. She says she doesn’t want to take her tablets, use insulin but knows if she doesn’t she’ll be ill. I know it’s her mental health but not in the same way as self harming etc. she is on the waiting list for counselling. Thank you x

[MusicalFurbaby in reply to Chris21]

I understand…mental health issues take many forms, not just the urge to harm oneself. Glad your daughter is seeking support with all her illnesses and concerns, and glad the info was useful!

[Krazykat26 in reply to MusicalFurbaby]

That's really helpful 🤗Thank you 💜🌈xx

[MusicalFurbaby in reply to Krazykat26]

You are welcome! 😁🌻