Digging into the Diagnoses
I want to share and be honest about the many diagnoses I have received over time. I’ve shared part of this story before. It is really hard for me to do this because it feels like I am admitting a weakness about myself (as an Enneagram 8, this doesn’t come naturally). But, I keep learning that getting things out in the open is helpful and I’ve also discovered that more people than we might think live in chronic pain every single day. A few years ago, I ended up in more doctors’ offices than I can count presenting with chronic UTIs and extreme bladder pain. Getting to the root of the problem has been an ongoing challenge. I’ve seen some of the best urologists in the many states I’ve lived, gotten on a plane to find a better one, and explored alternative practices recommended by acupuncturists, pelvic floor physical therapists, functional medicine practitioners, etc. All of those people have been mildly helpful (some were less than helpful). I’ve been told on multiple occasions that essentially, the pain that I feel is all in my head. Now, I understand how the body works enough to know that sometimes our bodies send pain signals to our brains that are actually false. But, I cannot overstate how difficult it is to walk into a doctor’s office and be told that this is all in your head. It makes you want to curl up under the covers and never come out. I don’t fault any one of those individuals on their own for this - our healthcare system is less than ideal.
Over the past six months, I’ve found a functional medicine practitioner that has been helpful in trying to get to the root of my bladder issues. I’m super grateful to say those issues seem to be 90% resolved. I still have my bad days, but they are fewer and fewer.
In the process of all this, we have been talking a lot about chronic back, neck, shoulder and rib pain that I’ve had for years (probably 3-5 years). My back has never felt great (almost my whole life), but it has gotten significantly worse over the past few years. Over the past month, my doctor has suggested that it sounds like I’m dealing with fibromyalgia which she believes is partially related to mold exposure. I’ve learned about linkages between fibromyalgia, interstitial cystitis, costochondritis, frozen shoulder, mold exposure, etc. At this point, I can see the connection between all of these things in the sense that there is significant inflammation in my body that has existed for years. The details of the diagnosis don’t necessarily matter other than saying, my body is crying out for some relief and it feels helpful to at least begin to understand what is going on under the surface. I’ve learned through this multi-year journey that (at least for me) it is less about the specifics of the diagnosis and more about getting curious about the various treatments that can help. I don’t think our healthcare system is really sophisticated enough to know much with 100% certainty, and I’ve come to accept that. Part of the work has been on me to advocate for myself, to explain in great detail what I am feeling in my body, and to push back against people who want to tell me I’m making it up. I thought my back pain was just something most people experience, not realizing that it is not normal to be living with debilitating pain all the time that makes it hard to get out of bed. I’ve learned that I need to be persistent if I want to experience any sort of relief.
I’m on a whole host of supplements (more than 10) at this point. They are all helping. I’ve been using saunas, stretching, therapy and mindfulness practices, changes in my diet, ice and heat therapy, regular massages, acupuncture and chiropractic care, and a whole lot of other things to begin to treat this. There are truly some days that I am holding back tears because my body is so uncomfortable that I want to jump out of my skin.
It is difficult living with an invisible illness. I am someone who is really committed to understanding the root cause, rather than just treating symptoms. I don’t want to be taking ibuprofen every day just so I can function (and this isn’t about judging anyone who has to do that, because I totally get it). I’ve been learning more and more about the linkages between physical pain and mental stress and beginning to understand how important taking care of my mental well-being is in this healing journey. I’ve been trying to be more gentle with my body which is a struggle. I am trying to make sure that my workouts aren’t making things worse, but frankly, sometimes it is tricky to understand what is hurting or helping. I know it is not going to be healed overnight, but I am committed to remaining on this healing path until I feel a sense of relief.
If you struggle with chronic illness, I see you. I’m rooting for you. I know how hard it is to not be taken seriously and to struggle to get through the day. I keep holding onto hope that one day, our healthcare system will better understand the root causes of our pain and be better positioned to help us. Let’s keep fighting for that day.
