How is it that people with MS are still getting told off for being ill? (Long vent incoming)
I had the situation today that i talked with a woman from a self-help MS group near me and i told her about how my caretakers (in my mental health shared apartment) dont seem to understand that some things are hard for me because of MS. Not if its something like a new Problem arising due to MS nor understanding when my strength is spent and i'm tired and exhausted due to MS fatigue nor anything else about MS. She told me that my caretakers really should understand it better or go educate themselves. I then talked to one of my caretakers and told her that I'd need someone who knows MS and/or has it, that can help me "Translate" or make them understand which things i can and which i cant do. I also told her that i just cant do some things or need breaks more often, and she honest to god told me that I should maybe move out, if I cant match the physical requirements. I'm just so sick of this. Like what am I supposed to do?! Cure myself? Also there is no shared apartment or a living space I know that does both mental and physical health. I'm sorry I'm so fucked up but i didnt choose it for myself... I then started crying heavily and almost did something i might have regretted badly later...
first, I am sorry. I am so sorry you are going through this. It's unfair. You have my support wholeheartedly.
Second, I used to work as a caregiver. In a group home for adults with intellectual and developmental disabilities, but we had many residents with comorbid mental health diagnoses. Our facility was funded by the state Medicaid and federal Medicare. The takeaway from my experience is a lot of knowledge of how the system works.
So I would ask if you are in a Medicaid or Medicare or blend of the two program sponsoring your placement in your housing. Because if you are, you can have a significant amount of control with the support that you need and care you receive.
I would be very happy to share any pearls of knowledge that I have, but don't want you to feel obligated to share any information that you are not 100% comfortable sharing.
That said, I abhor when a caregiver takes their frustrations out on the person they care for.
I am wishing all the best to you and hope that your situation turns a bend that gets a little easier for you.
💜💜So I live in Austria, we have completely different Healthcare sponsors and programs I assume. But I'd still be open and happy for any Ideas or recommendations of what I could do. Thank you so much for replying.
I did a quick dive into the Australian healthcare system pertaining to mental health, and saw a lot of promising resources. If you have Medicare already, you are eligible for several services. If you don't have it already, you are probably eligible. I'm providing a link that can guide you through the process of setting up and utilizing a mental health service plan.
https://hola.health/health-info/mental-health/mental-health-care-plan-in-australia/#:~:text=In%20Australia%2C%20individuals%20are%20eligible,a%20Mental%20Health%20Treatment%20Plan.
Setting up a service plan puts a team in place to provide services for mental health services (including housing) and comorbid diagnoses (including chronic disease). The service plan will also put safeguards in place to protect you and ensure you get the care you need when you need it.
It looks like it is equivalent to the system we utilized in our group home for our residents, and if that is indeed the case, a Case Manager would be assigned to provide oversight and step in when human rights or medical care are overlooked or ignored. I think that you would very much benefit from having a Case Manager (or equivalent) to help navigate your options and ensure that you don't encounter abuse from your caregivers.
I hope that this information is useful, I can do some more research depending on your state/territory.
Sending respect and support from halfway around the globe! 💜
Hey, I think you got me wrong lol. I'm from austria not Australia. But thanks anyway, you don't have to research for me but it's really nice that you tried. Thank you so much.
hahaha thanks for calling me out, that would be my befuddled brain filling in spaces! I used to be so clever... and then came the fog... I catch myself not making sense all the time now.
Despite my shortcomings, I am still happy to help. And am always here to support. I'm wishing you all the best! 💜💜and to follow up, I took a look at Austrian healthcare, and yeah it's a totally different system. It looks like your best bet is to ask your GP for access to a case manager or to become your case manager. I hope that your caregivers improve and that your living situation does too!
Thank you so much.
certainly if nothing else, this conversation shows that you're part of a community who cares about each member! And in the midst of some confusion we were able to get a little laughter in. 😀
That said, I do hope that you're able to get the answers and relief that you're looking for soon!
Best
Alene, Moderator
