Advocating with your various medical professionals can be daunting to those who are already worried that their invisible pain syndrome won’t be taken seriously. It can double in agony if you have found a doctor but are afraid to rock the boat of the relationship. I have, unfortunately, way too much experience in dealing with this double edged sword. After 17 years, I am no longer afraid. I am actually more than willing to find a medical professional who understands me, who listens, and who has the ability to understand that my syndrome affects me differently from others; translated, I am sorry doc but I do need different treatment from your “regular” patients.
I have blogged about being your own advocate many times before. In this blog, I am going to relate a real, and personal, story about my advocating with a new medical professional; one that I thought already understood my medical issue. As it turns out, I was not only completely wrong but was caught off-guard at the worst time. The professional is a therapist who is helping me with my PTSD from a rear end motor vehicle incident (MVA) that occurred two years ago now. A big piece of this emotional nightmare arouse because my fibromyalgia basically doubled, leaving me with a Master’s degree and no way to work.
When I first was diagnosed with our syndrome, I spent three years figuring out how to get my life back on track. It took a lot of hard work on my part, discovering my passion and, keeping a positive attitude. I went through my own, private, grief process over losing my life as it knew it before, but never anything close to PTSD. The MVA tore into my psyche, leaving me absolutely numb and left with the knowledge that my future as an independent therapist was probably never going to happen. I am now working on these feelings with my therapist, but on this day I almost walked out the therapists door five times. Instead of walking, I continuously re-gathered my thoughts and advocated the hell out of her problem.
Scene. I hadn’t been in for three weeks, two weeks of the holiday season and the last week, I had been doing just what we discussed, following the weather and cancelled my appointment two days in advance based on the forecast that we were in for a massive storm. I rescheduled for that same week, different day. Scene. I walked in and sat down, paid and waited to discuss how the heck I could get out of this mindful less issue and start my life again. Instead, the therapist began a discussion, that lasted my entire fifty minute session, about how it was the Super El Nino winter, I could be put on a waiting list and if she had a opening she would call to see if I was available, or, we could just put off treatment until perhaps April! After-all, she had a waiting list of other people who would be consistent and when I signed the agreement I agreed to pay for any missed sessions. Never mind that I told her two weeks later that with the impending weather pattern this would not possible, and, she agreed.
The statement left me in shock. I have never had to pay for missing a doctors appointment, never. Somehow, they have all understood that I have pain in my body that is out of my control. I have had to call them as late as two hours prior to an appointment to cancel and never have I heard anything but, hope you feel better soon. Maybe you are thinking here that I have been lucky. Nope, I have advocated with all of them. So, back to scene. As soon as the initial shock wore off, I began. How exactly would it help me to wait another four months to begin healing? How is helping me to heal by coming in completely by chance? After-all, if she had new patients, odds are they would fill her time. How much have you actually done what I asked and researched fibromyalgia? How would you feel right now if you had fibromyalgia, add a screwed up right knee from the MVA, PTSD, doubled fibro, and gaestroparesis? Do you know how often peers with fibromyalgia get dismissed because our pain is invisible? Yes, I look all groomed; make-up on, jewelry, nice outfit, it all looks good on the outside, but that has nothing to do with how my body feels today, on one of my ok days. Oh, you wouldn’t want someone coming in with the flu, but if I have a medical condition that the barometric pressure affects, causing me intense pain and brain fog, that’s ok with you?
I am now 30 minutes in and the roles have reversed. I am now her counselor on medical issues. And, a bit on therapy. I asked her why she waited to take up my entire session on this after we already had an agreement? I asked her what she would do if she had a patient come in with a condition she was unfamiliar with, wouldn’t she spend time researching the best methods to help that person? And, the flu was understandable, but if someone had a heart problem, or diabetes, or, or, and couldn’t come in a few times, would that be alright? After all, those are also invisible medical conditions.
Scene. Roles switched, compliment given to me by her and agreement reached. I understood she had a business and if I missed two in a row, then I would pay my co-pay for one of the missed appointments. Apparently, although she did not admit it, she had the three weeks in a row in her mind; she cancelled one, and the other was “open” during the holidays, in consideration of which I cancelled four days ahead of time. Lets face it, the holiday season is hard on the medical profession. She agreed to do further, more in-depth research, on forums and blogs, to understand what we go through. She agreed she should have done more before. She agreed that she should have emailed me.
The question remains, do I feel a safe rapport with her now? Time will tell. I hope this personal glimpse into my story of polite, but pointed advocating for myself, will assist you to help yourself.