So, you have a mystery illness…
Or cPTSD, dissociation, an autoimmune diagnosis, mold illness, MAST syndrome, POTS, etc.
You've had symptoms for a long time. You have seen many doctors and specialists. Nobody has any answers for you. Now, you're in therapy because you are beginning to feel despair. You don't know what's going on. You feel some relief because you found a therapist who works with this situation, but part of you is already out of hope. Your back is against the wall.
I am so familiar with this situation. In my early days as a bodyworker, many clients came to me in this condition. My own story has similar elements. Here is how I have seen this situation play out in therapy.
First, we have to establish a connection between you and me. I am just another provider. You have no reason to trust me. You are probably feeling isolated, confused, misunderstood, and dismissed. My job, first and foremost, is to help you feel connected, understood, and validated. I wish I could help you with the confusion, but a lot of this is confusing to me, too. We will have to work together, possibly with other providers, to get to the bottom of this. People can find answers, and a lot of people do get better. When people don’t get better symptom-wise, they can often find a way to come to terms with their situation and live a fulfilling life anyway.
Second, I support you in continuing to look for medical professionals, including functional medical practitioners, who can help you with your symptoms. It is not a foregone conclusion that you will need a medical professional, but you have symptoms, and it would be unethical for me to suggest that you should stop that search. Just because you have something that is hard for the medical field to recognize doesn't mean you don't have something that the medical field can help you with.
Third, I begin to provide integrative somatic trauma therapy. That means I support you with somatic interventions and parts work. I encourage you to add movement and nutrition that works for you. We can add movement and nutrition professionals to your team if necessary and accessible. If you have a diagnosis that needs support from medical professionals, adding trauma and somatic therapy can only help. If you don't have a diagnosis and your symptoms are solely from your traumatized nervous system, then we will have already begun interventions that will help with your symptoms.
When clients hear they may not have a diagnosis, they can feel dismissed, or they can feel relieved. If you feel dismissed, I want to assure you that just because someone doesn't have a diagnosis does not mean that what is happening isn’t real. What you are feeling is real; it may not be something that traditional medicine and therapy can help you with.
You may have something that is not a classic medical diagnosis and would be better supported by a functional medicine doctor and modern somatic trauma therapy. If you need support from a functional medicine doctor, I will help you get that kind of treatment. I have supported many of my clients' engagement in functional medicine.
The first time you begin functional medicine, it can be really confusing. It is often helpful to have somebody who has witnessed a lot of functional medicine cases help you navigate the immense amount of decisions that you're going to have to make on functional medicine route.
Sometimes, clients start receiving functional medicine and ask me, “Do I really have to do all this? Can we just treat my nervous system and skip the medical aspect? Won’t my symptoms go away if I just have a balanced nervous system?” In my experience, the answer might be yes. However, the clients I have seen that heal the fastest follow some kind of health support along with somatic therapy.
If you are symptomatic, that means your nervous system has been dysregulated for a long time, long before your symptoms emerged. Functional medicine, traditional medicine, nutrition, and movement interventions help alleviate and reverse some of the damage that has been done while we rewire your nervous system pathways. A multipronged integrative approach accelerates your healing. I will support you in making decisions about what protocols to follow and how much or little you want to do. Often, less is more (to a point).
If you feel relieved that you may not have a diagnosis, that's great. The course of treatment on my end as your trauma therapist is the same whether you have a diagnosis or not. Whether you have a diagnosis or not, you will have experienced stress and maybe even a traumatized nervous system just from going through this mystery-illness-situation. If you do have a diagnosis, I will tailor what we are doing for that diagnosis. Furthermore, I will always tailor what we are doing to your unique situation, diagnosis or not.
Phases of the Process
People who come to me for treatment for a mystery illness, dissociation, or complex trauma tend to follow a similar trajectory that takes about two years. The following are the phases of the process.
Slowing the chaos train takes about six months. This is where you and I are establishing rapport. I'm wrapping my head around the situation that you're in, and we are looking for ways to simplify your life without completely derailing you. I introduce you to parts work and we begin mapping your inner world. This period can feel like it gets worse before it gets better. Even though it feels like it's getting worse, I promise you it's starting to get better. Knowledge is power, self-knowledge even more so. “Mere” understanding can provide a lot of relief.
Here is a caveat about the chaos train. Indeed, many can slow its roll in about six months but there are some exceptions. Sometimes a part of you is not done trying to do life "it's way." That's ok, it just means phase one takes longer. You know its over when you feel a clear feeling inside that says "I'm ready." Once you're ready, the rest tends to happen relatively quickly. You can still get a lot of preliminary work done before you're REALLY ready.
Finding practices that genuinely work for you comprises the second six months. This is a period of experimentation and trial and error. We have an opportunity to learn even more about you and start to help give you more marked relief than the first six months. You'll get some relief in the first six months, but it starts to become more tangible in the second six months.
Then, you deepen into your practices. In the third six months, we know a lot more about how you operate based on your responses to our trial and error experimentation of the second six months. This is when people start to really get a sense of relief. This is when you are in the “gym,” so to speak, applying the workout regimen that allows us to shift how your nervous system processes function profoundly.
You can think of your former habits and processes like a well-cut trail in the woods. Your brain has been following a path that has been walked for decades. No plants grow on it. It is a deep rut of dirt. Now, we are creating a new path through the woods, one that works better for you. We are starting to pound out the dirt on this new trail, but it is thin and shallow and has a tendency to get overgrown.
You begin to trust the process, and you begin to trust yourself in the fourth six months because you've started to see how these practices specifically tailored to you improve many areas of your life. If you have a diagnosis, it may not take away the disease or the disease process. Still, you do notice that it lightens your load physically and helps you have a more helpful belief system about your disease process that lightens your load mentally. You may even experience a decrease in your symptoms, something I've seen many times, too many to count.
If you don't have a diagnosis and your symptoms truly are from trauma, it is common to see an almost total elimination of symptoms. At this point, you may not be symptom-free, but the difference between when you started and where you are now is so significant that you feel like you have performed a miracle. At this point, you have an orientation towards life and a set of practices that you can continue to do. Even if you are not symptom-free right now, you may experience the elimination of symptoms someday if you continue to practice cutting new trials in your neurological forest.
Upsides and Downsides
This process is not for the faint of heart. There are times when people regret having, as one of my clients puts it, “ left the shore” and wish they were back in the harbor. You may feel angry that you started this journey and scared that you left the tools that were “working” for you. You'll have to remember over and over again that those tools were also part of what brought you to therapy in the first place.
This process is only for people who have a basic support system, unfortunately, because it is a destabilizing process. You also need a reason for why you are doing this process, whether that is more quality time with loved ones, a better quality of life for you, or the ability to express the gifts and talents you have that these symptoms cover up. Only you can decide if you are eligible to embark on this recovery journey.
If you do choose to walk this path, whether you work with me or not, I commend you. If you choose to stay in the harbor, I respect your decision. This path is one of the hardest things anybody can do in life. This will not be like a typical accomplishment with public celebrations and awards.
Some people will get it, and some people won’t. But if you undertake this massive task, you won't care what other people think because you will finally have the peace of mind and freedom that is yours and yours alone.