How to Manage Changes in Diagnosis: Schizotypal to Schizophrenia

Diagnosis. A diagnosis can feel like many things.

It can feel relieving to have a name to put towards your experience. It can feel inclusive by allowing you to connect with others who share your diagnosis and experience. But it can also feel isolating by making you feel different from those around you. It can be labeling, making it hard for you to be known for anything else outside your diagnosis.

Meaning in Diagnosis

Usually as time passes, we begin to at least identify with our illness and from having the diagnosis. We are able to learn how to better manage our lives and how to live with an illness that can sometimes seem debilitating. We can get ideas and information from others who have been managing the illness for longer than we have.

Personally, I find comfort in my diagnosis. I may be one of the few that feels this way, but I find a comfort in knowing that my experiences and symptoms are identifiable and that I fit in somewhere. I experienced quite a long period of time where my diagnosis was unknown and during that time I found myself struggling to understand what was happening to me. It felt very isolating and, at times, intolerable.

A Changing Diagnosis, My Experience.

My personal experience with diagnosis began in 2016. In 2016, I was diagnosed with Obsessive-Compulsive Disorder (OCD). About a year later, my diagnosis changed to Bipolar 2 Disorder and CPTSD. A few years into this diagnosis and both my psychiatrist and I agreed the Bipolar diagnosis didn’t really fit.

For about a year, I was diagnosis-less besides my CPTSD diagnosis.

The experience was frustrating and made me uncertain, worried I was making this all up in my head, and worried that no one would recognize that I was really struggling with an illness.

A year later, I was diagnosed with Schizotypal Disorder. Under this diagnosis, all my symptoms and experiences began to make more sense. I found a community on Reddit that I could feel close to. I understood their experiences and they understood mine. This diagnosis felt like the one.

However, a year later, only a month ago, my diagnosis changed from Schizotypal Disorder to Schizophrenia.

The main change in diagnosis was due to an experience of catatonia and the realization that some of my symptoms have been worse in the past than most experience with Schizotypal Disorder. Schizotypal Disorder is said to be a less severe form of Schizophrenia.

My diagnosis change, despite being similar, was jarring to me.

The change felt like I didn’t fit in with the group I had felt so close to before anymore. I wondered if I even have the right to post there anymore.

The change also felt scarier. Schizophrenia is more severe than Schizotypal Disorder and I wondered what this meant for my future.

Was I at a higher risk of being unable to function? Was I at a higher risk of hospitalization? How would my daily life change to accommodate for this new and more severe illness?

Would my diagnosis bring about more stigma and less understanding now?

Questions ran through my head relentlessly. I felt nervous and disoriented. I felt like an important part of my life had been tipped upside down.

So, What Can I Do?

When we receive a diagnosis change, we pretty much have two choices.

We have the option to fight the diagnosis (this is a choice we ALL have)…

OR we have the option to embrace our new diagnosis.

Fighting a Diagnosis

If you truly believe that this new diagnosis doesn’t fit you, this may be the option you should take.

However, I want to point out, that sometimes we don’t have the level of insight needed to SEE or acknowledge our diagnosis because the diagnosis comes with a lack of insight.

Sometimes we have to trust those around us to help us make these decisions and trust that they are doing what is best for us. This is where having a good relationship with your doctor will come most in handy. Trusting them even when you’re not 100% sure.

Also be mindful of that fact that the longer you don’t accept the diagnosis, the longer it will take to get treatment and potentially begin improving from the new diagnosis.

Embracing Your Diagnosis

Acceptance

The first part of embracing your diagnosis is finding acceptance in the fact that this IS your diagnosis.

This is sometimes the hardest part of receiving a new diagnosis.

Change is exceptionally hard for me to navigate and having a new diagnosis required some level of change to accept my new reality.

Allow yourself to work through the feelings of having a new diagnosis. Fear. Anger. Anxiety. All emotions we may experience around the introduction of a new diagnosis.

Give yourself time to accept your new diagnosis. How long this takes can vary for everyone but allow yourself space and grace when working through what this new diagnosis means for you.

Know that accepting your diagnosis does not mean this is who you are, it means this is a piece of who you are, a small or large part of your story, but still just one piece in a whole puzzle of pieces that make up who you are.

Also be aware that accepting your diagnosis does not mean you are giving up or giving in to your illness, it’s exactly the opposite. Becoming consciously aware and accepting help means taking control and having the ability to make choices that empower you instead.

Don’t expect accepting the diagnosis to be linear. Some days will be easier than others. It’s all a part of the journey.

Create a Support System

One of the next things you can do is decide who you are going to share this information with.

There is no rule that says the people who knew your diagnosis before need to know your new one, so give yourself space and time to really decide who you trust with this change.

For some, it may feel scary to tell anyone. Maybe you hadn’t told anyone your previous diagnosis either. That is okay.

The benefits of telling other people should be that you find support in those you tell.

Family members and friends can be our greatest support systems when it comes to learning how to navigate and manage our illness. They can offer insight that we might not have and can help keep us accountable with what we need to be doing for our health. They can also just be a listening ear that helps us sort out our feelings and thoughts when overwhelmed.

Never feel pressured to share more than you feel comfortable about your illness or your experiences. Those who are offering support should be doing so with no expectation or demands as to how much you need to involve them. You get to choose who knows what and how much.

If you think someone will not be supportive, or will diminish your experience, waiting until you have processed your diagnosis yourself may be the best decision for you.

On the flip side, maybe you’re like me and you don’t have much support from friends and family. My doctor and my service coordinator are my biggest forms of support right now.

Creating support in the areas where you can find it will help make your diagnosis easier to cope with and will lead to a more fulfilling experience as you navigate this new territory.

Also, don’t feel shy when it comes to telling others how they can best support you and your new diagnosis. Some people may not know how to handle or provide support for someone with a mental illness, giving them direction can be relieving for them but also ensures you are getting what you need from your support system.

Educate Yourself

The last part of really embracing your diagnosis is educating yourself as much as possible.

Educating yourself can be somewhat overwhelming sometimes.

How do you even know where to start?

National Alliance on Mental Illness (NAMI) is a good place to start. NAMI also has a free Resource Directory where you can scroll through to find your particular illness or problem and find organizations or resources that can best help you.

Ask your doctor questions.

Your physician will be a wealth of information that you can tap into to learn more. Before your next appointment, get together a list of questions that you want to ask your physician about your illness.

If you feel too uncomfortable doing this in person, send them a message using their patient portal messaging system or through email if they provide it to you.

Asking questions also shows your doctor that you want to be an active part of your treatment plan. Understanding your treatment options and knowing general knowledge about your illness will often times give you the ability to have discussions with your doctor about your treatment plan that will impact how you choose to move forward with your treatment.

This means getting the chance to choose between medications instead of just accepting whichever one is initially suggested, choosing between different types of therapy that may be supportive for your illness, and knowing your resources for assistance before you need them.

Another great resource would be your therapist, psychologist, or counselor if you have one.

Forum boards are a wealth of information.

Knowing which forum boards are the most helpful with the most reliable information can be tricky, so I suggest starting with some of the resources and forums included in NAMI’s Resource Directory above.

These can be a great place to find more information about the specifics of your illness.

This is also a great place to find a lot of support that you might not find elsewhere. Getting to know and interacting with other people who also have your illness and who already have navigated the things you are going through can have so many added benefits.

After you’ve had a chance to absorb your diagnosis and get more educated, you should ideally begin to experience a better quality of life from your new found knowledge. Knowing more information about how to take better care of yourself and what other options are out there for you should open up new pathways to explore and get hope from.

If you experience a worsening in your disorder after finding out your diagnosis, be sure to check in with your doctor or therapist and let them know that you’re struggling with the new diagnosis. They will likely have tips and helpful thoughts on how to get past the shock of the new diagnosis and how to begin better embracing your diagnosis in a way that can lead to some improvements in your life.

Share in the comments what your experience has been like with accepting or rejecting your diagnosis!