No-one Will Advocate For Your Health Like You Will
Those of you who have followed my writing throughout the years, will recall that I have struggled significantly with chronic urinary tract Infections. I started the process of trying to get answers for the underlying cause, in 2020. The general response I have received from doctors and my urologist is “Some women just get chronic UTIs. It is the way it is”. The “solution” provided to me, has been to take a low-dose antibiotic every time I have sex. Which frankly, is not a solution in my mind. Since 2020, I have had approximately three to four UTIs a year. I have been to pelvic health physio and only as of last month, was referred to a urologist by my request to my GP. The urologist stated that my UTIs are caused by sexual intercourse and that my best line of action, is to take the antibiotics after sex. It was only after I asked about urea plasma and estrogen cream for low estrogen due to hormonal birth control, that it was confirmed these could be underlying causes by both my GP and the urologist. These were never topics initiated by them.
Two nights ago, at 2AM I ended up passed out on my bathroom floor after calling out to my nesting partner that something was wrong. I was brought to the ER by EMS in excruciating pain. After 6 hours in emergency, I was diagnosed, again, with a UTI that had spread to my kidneys. I burst into tears as I received the diagnosis saying that I did not understand how this was happening. My last UTI, was three months ago. I urinate after sex, my male partner and I have started using condoms, I take daily supplements and hygiene is always a priority. The UTIs are progressing so quickly at this point, that I am scared of having sex. This is a devastating impact for both my self and my partner. Growing up fundamentalist roman catholic, I have done an immense amount of emotional work to enjoy sex. I have needed to do work to reframe sex as an act of rebellion and believe that I have a right to pleasure. The fact that I continue to have UTIs, which are becoming more dangerous, feels like an innate punishment, despite knowing that this is not actually the case.
My second partner, has been diagnosed with RRMS (Relapsing remitting multiple scurosis). It took the Ontario health care system over a year to diagnose them due to the waitlist for MRIs. Despite them having full health coverage insurance, almost six months after the diagnosis, we are still waiting for them to begin treatment. Between errors by their GP, the insurance company creating intentional delays and the MS advocacy program being a non-profit agency, they are left to advocate for themselves against the systems placing barriers in their way. We are still in a battle with the insurance company who continues to create obstacles to cover their treatment, which costs about $2000 a month.
Clients repeatedly come to me about their experiences with psychiatrists and psychologists. Often times, primarily my female identifying or presenting clients, come away with a diagnosis of borderline personality disorder. This often shifts how their practitioners view them when they try and advocate for themselves. In my opinion, BPD is a trauma and attachment based disorder which is misunderstood by the individuals giving out the diagnosis. In addition, many BPD traits not only overlap with Complex-PTSD but also, autism in women. This diagnosis in more cases than not, creates an added stigma and barrier for my clients to have to deal with in the medical system. They end up experiencing additional trauma by the medical system that invalidates and gaslights them.
You are your own best advocate for your health. The bottom line is, that we are a number. We are a file. We are swimming in a system that is actively being dismantled by our government. Doctors are overwhelmed and we are left to do our own research and come to them with proof of what we believe is going on.
Although I am scared after my latest experience, I am persisting in finding out the cause of my UTIs. I have contacted my old pelvic floor therapist and asked for any knowledge she may have on chronic UTIs. I have asked (again) to be referred to a gynaecologist, for a ureaplasma swab (my GP only screened via a broad urine sample, which after doing research online, has been found to not be accurate). I am going off of my hormonal birth control and will (continue) to advocate to try estrogen cream as there is some correlation between low estrogen and reoccurring BV/UTIs and yeast infections. I am going to public health to get tested for all STDs and STIs. My partner is doing so as well.
The reason for all of this, is that I blatantly refuse to believe that in 2024, our answer to reoccurring UTIs is ongoing antibiotics. I am building a case for myself to bring to doctors and specialists of all the things I have done and the answers I have collected thus far. I will not argue, I will advocate.
The same is happening for my partner. I have asked to be added as a contact for their medical records so I can assist in advocating for them. I have emailed our MP and MPP asking for assistance in advocacy. We will be bombarding the insurance company and potentially threatening legal action due to their ongoing negligence and contacting my partners HR department for added advocacy and pressure on the insurance company.
I continue to educate clients on BPD and the pseudoscience of psychiatry. While psychiatry has its place for significant mental health disorders, most times, the practice does more harm than good. Often times, clients are silenced and made to feel as though their voices don't matter. The DSM, the basis of psychiatry, is a manual written by mostly white, wealthy men who determine what mental health symptoms do not fit within our capitalist society. Until psychiatry practices neurology, I will continue to be skeptical of the practice. I will continue to connect my clients to resources that match what they believe offers them answers for what their experiences are. I will continue to advocate that BPD is a trauma and attachment based disorder and educate clients on attachment and trauma. I will continue to educate clients on autism and ADHD and the nervous system so they can approach their GPs with more knowledge and education to back themselves up.
Coming from trauma means that many of us have developed skills to navigate the world around us. One of my skills, for better or for worse, is that of advocacy. Growing up in foster care, led me to be a documenting queen. When systems begin to work against me, I fight back with documentation and building a case as if I will one day, go to trial. This was my reality in foster care and this skill has led me to making progress in advocating for myself and my needs. As well as, the needs of others who experience injustice from systems.
As survivors, we are silenced. We grow up often putting the needs of others before our own. No-one will care for our health. We need to do it for ourselves. If we are not, ask yourself, why? We need to reframe advocacy for our health, as an act of rebellion in a system which is failing us.
Additional side notes:
It is important for your partners/roommates to know your medical information for emergencies if EMS is ever needed. Create a Google Doc (or the equivalent) containing: Your diagnosis, medications you take, your doctors and specialists (as well as their contact information), emergency contacts and your allergies. Being passed out and not being able to provide this information to EMS was really scary. My poor partner did not have the answers to their questions and I can only imagine how challenging it is for EMS to show up and not have vital information needed to make a quick emergency assessment.
An additional note to say, Thank You to EMS and the paramedics. They were able to wake me up, give me an IV, get me to the hospital and help me manage my anxiety attacks. They were able to piece together bits of information I was able to provide and were able to give me pain meds when they saw how long it would be before I would be seen by a nurse in emergency. They were kind and focused and I could never do their job.