Someone recently asked me how I deal with the anger that comes with being dismissed for so long with rare disease.
So you just got your diagnosis. Itās hard to know how to feel, right? Thankful that you have answers? Angry that countless times you were told it was in your head? That you couldnāt POSSIBLY have that, only to have EXACTLY that..
Pheochromocytoma/paraganglioma are considered a very rare disease. The diagnostic process is a bit different for rare disease patients, and it comes with a different set of emotions when the diagnosis is finally delivered.
Iām going to talk a little bit about how I personally cope with the emotions that come from diagnosis, and what I do with the anger that comes along with it.
Of course no one wants to be sick, but with the untreated symptoms wreaking havoc on your body… honestly, by that time we are often praying for a diagnosis. Without a diagnosis, thereās no opportunity to heal, to take control back. To do something! Itās a strange dynamic, praying to be told youāre sick. Then the moment itās confirmed.. we will give anything to be told weāre āfineā again.
My first diagnosis came as a complete shock, I was 19, Iād understandably never heard of pheochromocytoma before. I never actually thought I had a 1 in a million tumor, not once did that run through my mind. I just thought I was just having sporadic attacks that made me feel like I was going to die every day. I was also relieved. I was relieved that I didnāt have to argue anymore, to prove myself to anyone. I was finally going to be able to take control over my body, and get treated. Or so I thought…
My second diagnosis was different, itād been 4 years since my first Pheo, and Iād never been symptom free. I still dealt with the daily attacks from the adrenaline, and was being told that I was fine all over again. It was like I was stuck in a time warp that would repeat itself every day for years. I was continuously being convinced that I was ājustā anxious, that my blood pressure machine was wrong, my blood sugar is probably just low, etc. I heard it all. I still hear these things every day from people around the world.

My second diagnosis was a different experience, because I knew I had the disease, I knew exactly what it was, I just needed the proof. And then by the time I got proof, it was considered terminal. I was now terminally ill at 24 years old. Tough pill to swallow. How am I supposed to feel this time?
Thereās no right or wrong feeling. The first time- I felt shock and then the fear of uncertainty quickly set in.
What will my future look like? Will I be able to go back to work? Will I have a normal love life? Will I always be in pain? Am I going to constantly have to be worried about it coming back? Am I going to be treated differently? Do I want to be treated differently? Am I different?
The second time- all I felt was numb, and then anger set in. I was so angry. My husband was angry. We were outraged that this could be able to happen, only… Iād find out later that it happens more than I think
I think I can confidently say I hear at least 1 person per DAY that is going through this. With this specific disease. This incredibly rare disease. Itās been six years since my diagnosis, so thatās a lot of people.
Iām generally a very happy, positive, bubbly-type chatty person. I donāt like feeling so negatively for extended periods of time. Holding onto anger. But I also know now that itās important to acknowledge your feelings, so that you can work through them. Toxic positivity isnāt a better solution, being positive and hopeful needs to come from a place of true belief. That way the negative emotions donāt become pent up little balls of anger that burst at any given random time.
I initially channeled my anger into taking my control back, my plan? Getting a new medical team. One that would hear me, and be specialized. I needed a miracle team. I felt like if I could regain a sense of control.. Iād be able to feel different. I didnāt know what emotion I was looking for, I just needed to get past anger. I didnāt realize that Iād be holding onto that toxic feeling for longer than Iād like to admit.
Itās similar to the process of grief, youāre grieving your old life, your sense of normalcy, your old self. The ability to do mundane tasks, to relate to others in your circle, in your age group, the feeling of not knowing the importance and impact of living. Itās a hard dynamic for me because I was always so young, and I felt cheated out of a lot of opportunities I KNEW I would be amazing at. We all have things to grieve, it needs to be done.
So letās talk more about how I regained that control. 48 hours after my diagnosis, I had arranged to see a new specialist, a whole new team. I knew I needed the best, I was 24 and given a poor prognosis. Honestly? I was dying, and they werenāt shy about telling me so. You donāt mess around when it comes to your health, you do anything and everything to change your circumstances.
Securing this new team… it made me feel I had purpose, that I was capable, I felt proud. These emotions are a lot better than anger, am I right?

As I rebuilt trust with these new doctors, fragments of anger would slowly chip away. My fear of not being heard, was slowly diminishing. Time. It takes time.
But what if we donāt have time? Iām terminal, I donāt have time to go through this long process.
Terminal illness isnāt a ticking time clock, it FEELS like that at the beginning… believe me. But I am here to remind you, eventually, with this precious time, your mindset changes.
I decided I needed an outlet for the fear, anger, and acceptance I so badly needed.
Thatās when I started my blog, as a way of channeling these feelings into something good. Something with purpose. I wanted to know my experience meant something. I wanted my diagnosis to be an example for health care practitioners around the world. I wanted my story to be told to EVERY single pheochromocytoma patient.
I wanted my words to live on forever knowing they were making a difference.
Channeling your fear and anger into helping yourself? Thatās a beautiful feeling.
Channeling fear and anger into helping someone else? That is when those fragments become whole again.
But letās back up, Iām not saying everyone has to start a blog. What I am saying is that itās important to get your feelings OUT, write them down somehow. Whether that be a journal, a support group, a diary, or a video blog. Even if you just talk to your camera and never share it! Whatever you feel comfortable with, itās important to let your story be heard. Even if itās just for you, this type of therapeutic action is something that for me, changed my life.
Iāve recommended different types of journals, diaries, gratitude practice, all different sorts of ways of expressing feelings to many people over the years: Iāve never heard someone say it didnāt help them in some small way.
Hereās the hard part: forgiveness. Eventually, down the road… I forgave everyone who I was still holding onto anger towards. This is NOT an easy step, I wonāt sugar coat it. To get to this point, itās a lot of work. Self discovery, trauma healing, mental health practices, growth. However, actually doing it? Meaning it?
Itās so unbelievably freeing.
I know I probably donāt need to remind anyone of this, but forgiveness is not for the other person. Itās for YOU. Itās so that youāre not suffering with those toxic feelings all your life, those fragments that are making you feel broken, while they are out in the world not even giving it a thought. You donāt have to personally forgive them, you do it however you want to. Whatever makes you feel safe.
It can be through prayer, you can again write it down, or just sit alone with yourself and say it aloud. You can role play with someone you trust.
I personally did just that, all of the ways. I had a lot to get off my chest, a lot of years of trauma and forgiveness. I only recently got to this step, after 6 years. Everyoneās time line is different, and thatās okay. Even if you decide, āno, I canāt possibly forgive someone who did this to meā
Thatās okay too.
This is YOUR healing process, and you do with it what you decide. I can only let you know what I did, and what helped me. Made me feel whole again.
Iāve had a lot of people come to me and say āI could never do thatā. Iām with you, Iāve been there. I said that repeatedly in the beginning, then it shifted to āone day, I think Iāll be readyā and then one day, I knew I was
So as you can see, it takes time, no one situation is a one size fits all. However we are all still very similar, and much closer than you think. Thatās what being part of a community is. No matter what type of diagnosis youāre receiving, itās going to change your life. It doesnāt have to change you, the person you are inside.
Your āfabulousā…
āFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!ā ā Pheo VS Fabulous

Iād like to send out a personal acknowledgement to everyone surviving and thriving today. Being national cancer survivors day, I thought this would be the perfect time to share this incredibly important article.
When people hear cancer survivor, they think past tense, someone whoās ābeatā cancer and is alive today.
A survivor is someone whoās been diagnosed, actively in treatment, in remission, and someone like me, whoās a mix of all of the above. Someone whoās surviving every day, never having the time where they can say itās in their past. But they can say –
Iām a survivor
Happy survivors day zebras š¤š¦
Pheo VS Fabulous