(The following article was contributed by Attiya Khan.)
Today is Rare Disease Day. In December 2016, I was diagnosed with pheochromocytoma (pheo). Pheo is a rare tumor that usually develops in cells of an adrenal gland.
I want to let others know what this has been like for me. This is not so others can feel sad or sorry for me. Please don’t! I just want to share my experience. I feel like I have been hiding it (not too many people know) and for some reason, all of a sudden, I want to tell you about it! Plus, I’d like to raise awareness about it.
My tumour is in my right adrenal gland. We have two adrenal glands – one above each kidney. Both the tumour and the adrenal gland will be removed on March 23rd. That’s 23 days from now. This is all I can think about. I think about what the surgery will be like, how my body will respond to the surgery, what kind of scars I will have and how I most likely will be back to feeling like myself once the tumour is removed. I actually cannot imagine not feeling sick, or being able to walk out the door alone, or socializing again, or working with my incredible team on the soon-to-be released film A Better Man, or playing with my son or going for a run with my sweetheart, Alex.
My symptoms started affecting me in April 2015. I experienced them as episodes that occurred several times per day. The episodes come on suddenly and then disappear after a few minutes. I would have painful, brief (2-4 minutes long) headaches that came on suddenly. These headaches felt like my brain was pulsing against my skull and I thought my head was going to explode. If Alex was near me, I would have him put both hands on my head to apply pressure. This didn’t stop the pain but it did make me feel better. While the episode was happening I felt like I couldn’t function. I couldn’t move, talk, or breathe. I would try to grab onto something or someone to steady myself as the episodes were so intense I felt like I might faint. They were painful and scary. After each episode, I felt exhausted and sad. What I also noticed in April 2015 was that I could not stop sweating, ever. And I had constant hand tremors that became more severe each month.
My doctor ordered a CT scan. It showed sinusitis. I took a nasal spray. I remember at the time thinking that it helped minimize the headaches. However, in the winter of 2015, my headaches started to happen more frequently and became more severe.
By the summer of 2016, I began to have many more symptoms. My episodes included severe headaches, heart palpitations, nausea, shortness of breath, ridiculous amounts of sweating, dizziness, numbness from the bottom of my knees to my ankles, coldness in my hands and pallor in my palms. My hand tremors became so bad at times that I couldn’t hold anything without dropping it. I gagged violently and threw up almost every day. I couldn’t shake the incredibly scary feeling that I am dying. I felt like something was slowly eating me on the inside.
I went to my doctor. I went to emergency rooms at several different hospitals. I was desperate for someone to take my symptoms seriously. I was not being heard at all. One emergency doctor laughed at me, cut me off as I was describing my pain and told me that I was having panic attacks. He spent less than 5 minutes with me after I waited 4 hours. I told him that I knew I was not having panic attacks because I had had them in my early 20s and they felt very different than what I was experiencing now. The look he gave me was condescending and rude. To me, it felt like he did not believe anything I said. The thing that bothers me the most is that even if I were having panic attacks, the doctor offered no real support. He made it seem like panic attacks are a small thing and they aren’t. They are terrifying and can mess up your life in huge ways. They should be taken very seriously. In any case, the emergency room doctor refused to give me an MRI and I left without any tests being performed.
Throughout this whole ordeal, almost every doctor I saw thought I could be having panic attacks, even after I explained all my symptoms. I’m so angry about this. I realize that a few of the symptoms commonly associated with pheo are similar to those linked with panic attacks. But I know my body. I knew something terrible was happening inside. I needed a doctor to care and say “ok, I hear you, let’s do a range of tests until we figure out what you have. I want to help you feel better. I’m sorry you are in pain”. Up until that point, no one had ever said that. To me, this is unbelievable.
I felt like no one wanted to take the time to really figure out what was going on with me. I was so fatigued by the illness that I did not have my usual energy to advocate for myself. One thing I’ve learned from this experience is the importance of patients advocating for themselves or having others advocate for them. And for some of us whose illnesses cause us to be exhausted, it can be impossible to advocate for ourselves. It took both me and my partner a while to learn the importance of this advocacy and the fact that I needed more support than we initially anticipated. Most people we have talked to had to learn this the hard way: through experience with a severe illness – either their own or that of a loved on.
Thankfully my partner, Alex ended up coming with me to my appointments and he took notes on everything the doctors and I said. We even put together a detailed, colour-coded one-pager with all my symptoms, key medical history, and timeline to help the many medical professionals we were seeing quickly understand my situation without having to repeat everything from scratch each time.
Having someone with me made everything so much easier. I’m grateful to have someone who can do this with me. I noticed a huge shift in how I was being listened to and treated when Alex accompanied me. All of a sudden, I felt like people had more time for me. While on one level this was a huge relief, it also troubled me that, without Alex by my side, and as a woman advocating for my own care, the health care system seemed to suggest I was just overreacting. There is a long history of women dismissed as “hysterical” when in fact they are suffering from something very real.
At the end of summer, I had an MRI. It showed a small “pineal gland cyst” in my brain. I immediately started researching pineal cysts and began to feel that this was what I had. I went on online message boards and noticed that some of my symptoms lined up. I was referred to a neurologist in October 2016. The neurologist thought that my symptoms were not linked to a cyst in the brain. Luckily, I had a very mild episode in front of him. Seeing this, the neurologist referred me for cardiology tests, neurological tests, blood tests and urine tests. This was the first time I felt like someone was doing something concrete. I am so grateful to this man for his curiosity.
At the end of November 2016, I went to a dinner at a friend’s house. At this dinner I met a woman who just happened to be an internist (specialist in internal medicine). Alex and I told her about my health issues. She said that if she were treating me, she would test me for pheochromocytoma. We asked her to spell it and wrote it down. How she thought of this very rare condition after only a few minutes of my describing my symptoms, I still don’t know, but I feel incredibly lucky for her instincts and caring. I still wonder what would have happened (or not happened) had I not met this woman. We exchanged emails.
The next day the internist emailed me and said she had spent some time researching my symptoms. She thought I should get tested for pheo. She told me there was a 24-hour urine test and a blood test that could detect it. By this point, my episodes were happening about 8-12 times a day. I was unable to focus. I could not work. I could barely leave the house. I was so fatigued that I was napping (I have been living with severe insomnia for 10 years so napping is very unusual for me). When I did leave the house, I constantly worried that an episode would happen. Episodes did happen. My 10 year old son would have to stop and hold me up while walking to school. I had to grab onto people on the sidewalk, crossing the street and in the grocery store. I had so little energy and I was losing my strength. I was losing weight. The skin in my face felt really thin. My mouth was very dry. I felt strange things I had never felt before: my bones ached, the blood in my body felt heavy, my eyes hurt, my entire body felt sick.
When I finally completed the 24-hour urine test, the results showed that I had pheo. I was referred to an excellent endocrinologist who I can email at any time and she emails back promptly and sometimes calls back even on evenings and weekends. It was nice to finally meet someone who understood what I was going through. Her receptionist is also amazing and has helped me realize what a different doctors’ office staff can make in patients’ lives. I want everyone to have someone like her helping them. I never feel like I am bugging her with all of my concerns and questions. I can tell that the endocrinologist and her staff really want to help me.
Today, I am nervous to go out alone since I am unable to run or defend myself if needed. Anyone who knows me is aware of the intimate partner violence I experienced as a teenager. Since then, my body has been programmed to be on alert and ready to run if I need to. Today I am physically unable to do anything but walk very slowly. Pheo has triggered so much of the isolation, pain, discomfort, and sadness that I experienced in the abusive relationship I was in as a teenager. I wish medical professionals thought more about how past trauma can affect a patient, and about the connections between past trauma and illnesses both mental and physical. I think it would be very beneficial for our medical system to acknowledge that so many of us needing support are also survivors of violence.
I also wish more doctors, nurses and receptionists were kind to patients. Acknowledge us. Say hello. Ask us how we are. Make eye contact. These small gestures of respect and compassion make an enormous difference.
I wish the medical system adopted a more collaborative approach towards patients and a deeper respect for patient experience. Truly listen to us and be open to the possibility that we may have some answers or ideas to figuring out our own health diagnosis. Just doing these things would have made a huge difference in my life. I have had a few health care professionals treat me with kindness but many have not. I’ve been living in my body for longer than they have been “caring” for me. Why can’t this be a collaboration? Your expertise and my experience. Both should be valued. In my case, I feel like a collaborative approach could have led to a much earlier diagnosis and many fewer months of uncertainty and suffering.
The experience has also taught me what a difference health professionals who truly care can make. It is quite possible that my life has been saved through a combination of caring interventions by the internist, my endocrinologist, and my endocrinologist’s staff.
Having pheo has taken my spirit away. I don’t feel like myself. I realize that, until now, I never came close to understanding what it’s like to have a debilitating illness. Sitting at home and not feeling like I’m a part of the outside world is new to me. I also feel like I’m not really part of my inside world at home. I just sit and watch as my family and friends come and go. This is quite painful.
I must acknowledge the privilege I have as a person who had been healthy and able-bodied for over 40 years, and that has an amazing support network around me. I do feel lucky that I can walk, eat without help, sleep in my bed and be at home with my son and sweetheart. I have had friends drop off a dinner for me and my family every day for almost two months now. Flowers and treats are left on my porch. I receive texts and emails that show love and kindness every day. Friends hang out with me on my couch and tell me stories, share gossip (thank goodness) and make me laugh. This support has saved me. I think often about people who are ill and don’t have a support network like I do. And that is just not fair. And it’s sad.
I also feel lucky that it’s highly likely that I will wake up from surgery and within six weeks I will have regained much of my energy.
But even if my illness can be cured, I believe pheo has permanently changed me. I have learned to notice and appreciate the small things. I have learned to experience meaning in the boring, the everyday. I have learned how important my friends are to me. I have learned how little we know about what others are going through. I am more committed than ever to living a full life full of appreciation and care for others. In a strange way, I feel more alive than ever. I am grateful for this.