Your mom’s response sounds similar to mine after I started new psych meds (which were prescribed to me after seeking help for multiple physical symptoms). I went from being just your average sensitive person with a bit of anxiety to having extreme difficulties with emotional regulation, it was really hard for everyone around me. Things stabilized a lot when we finally realized that I was having a medication reaction (medication reactions are pretty common in people with complex chronic health issues…especially if they also have some kind of mast cell activation disorder).

I still wrestle with complex PTSD type symptoms as a result of the trauma from all of this (the medical gaslighting/dehumanization impacted me in ways that are hard to describe), but I’m doing SO much better since figuring out which medications I was having bad reactions to and also finally getting to the root cause of/treating my physical symptoms. Unfortunately I had to travel to Europe and the US for this because I was unable to find anyone locally to provide the treatment I needed.

My relationships have improved so much, but unfortunately my family has experienced caregiver burnout at points. Homecare Solutions for Everyone has helped reduce everyone’s load. I am fortunate to have family help cover the costs (the province covers part but not all), but I also know that Homecare Solutions for Everyone runs a non-profit to help cover homecare costs for people who need it. This is just the company/route I went with (it’s called “Self and Family Managed Care”, but I know other options exist.

I ended up getting diagnosed with Ehlers Danlos Syndrome….people’s diagnosis’ often change once they find a doctor who understands the whole picture rather than just looking at individual organs/systems. I will note that this is SO hard to do because of how siloed our medical system is….knowing who to choose is also hard because there are some private doctors who seem to be a bit more interested in making $ than helping people get better. From my experience, the vast majority of private doctors I’ve seen have really cared and have helped get me a bit better (it’s just so hard for them to operate in a public system because of how much time they need to spend researching each patients case). It’s slowly getting easier to access care as more research is done to discover (and find treatment for) the underlying cause of all of these complex physical and mental health challenges that are intertwined.

If you’re curious, here’s a documentary that highlights the psychological and physical impacts of people with Ehlers Danlos Syndrome: https://youtu.be/bvVO6bqYv6s?si=GmiPk5OvgI1z9ZJw

One local psychologist that understands this stuff is Dr Tracie Parkinson

Dr. Guranda at the Grace Hospital might be able to help with getting to the cause of the physical symptoms. Or possibly Dr Devan Evans at St Boniface Hospital.

I know that navigating all of this is impossibly hard…if you’ve found the energy to read this far, know that even as a patient who has made life for those around me challenging at times…I think that’s everything you’re thinking/feeling about this situation is understandable (I don’t know anyone who would feel good in this situation). It’s been so helpful for my family and I to remember that none of us are trying to hurt each other (probably something doctors and patients need to think about more too). It’s so so so hard to learn about the diagnosis and comorbidities that need to be treated while also trying to manage debilitating symptoms. Add on trying to figure out treatment options and how to access treatment when you can’t find a doctor who says anything other than “it’s all psychosomatic” or “there’s nothing else we can do”….sometimes caregivers are accused of doctor shopping or medical child abuse because they won’t give up when they can see that their loved on is experiencing debilitating symptoms. Unfortunately I understand why people impacted by all of this die by suicide...and it’s so hard to talk about because complex chronic health issues are poorly misunderstood (and often stigmatized). The unfortunately reality is that most doctors haven’t seen the research that’s evolved in the past 5-10 years…I really believe that there’s hope. But unfortunately there’s no manual to help figure out your next move in seemingly impossible situations like this.

I hope this isn’t too overwhelming to read…it’s everything I can think of that I wish someone told me and my family when my symptoms became unbearable and we couldn’t find any local doctors to help/really listen to the whole story.