Being a participant in my own health

I believe medication can only work to a certain extent. Your mind is more powerful and if you believe that medication will or will not work, you are right. Your body will follow what your brain thinks.

Almost two decades ago, I was told that I had Hepatitis C. I contracted it from blood that I received between the 1980s and early 90s. At that time, the Canadian government made a monumental mistake of allowing unscreened, untested blood donations from American prisons. The blood was tainted. The Canadian government knew it was tainted blood but they were in desperate need of blood donations. They knew but they turned a blind eye. The blood products were tainted with HIV and Hepatitis C.

Many people who depend on blood product infusions such as those who have Leukemia, other types of Cancer, and Thalassemia like myself, contracted a life-threatening disease. Two thousand Canadians contracted HIV, and 30,000 contracted Hepatitis C.

Well, I was one of those 30,000 unlucky ones who contracted Hepatitis C through a blood transfusion. As a person who was born with a blood disorder, I required blood transfusions every three weeks since a few months old. To date, I’ve received over 800 blood transfusions.

In 1993 the Royal Commission set out an inquiry into the Blood System in Canada. The final report from the Krever Inquiry investigated and found negligence on the part of the Canadian government which failed to take precautionary screening and testing measures to protect Canada’s blood supply. It was found that the Canadian government made cost-cutting attempts, was part of cover-ups, and collected imported blood from high-risk American donors (prisons). All these factors were preventable.

At twenty-five years old my world turned upside down and then stood at a stand-still when I was in the Liver Specialist’s office listening to him tell me that I had to undergo a fourteen-month-long treatment to hopefully eradicate the Hepatitis C that had infested my liver. He said that I needed to do this treatment sooner than later in the hopes that my body would have a better chance at responding to it positively and that I would be able to endure the side effects a little easier than if I wait till I am older. I had to put my life on hold. I was finishing up my University degree, was working part-time and I was in a long-term relationship.

The treatment had only a 45 % chance of success rate. They would only allow you to continue the treatment if your blood work showed that the viral load was decreasing every couple of weeks. The minute they saw that the viral load would not decrease at one of my blood work results, they would end the treatment and claim it as “unsuccessful”. Every time I went to those bloodwork labs, I would be filled with anxiety, hope, and fear. I just never knew if this treatment was going to work, if I would have to wait for another treatment to come along and then stop my life once again, or if my liver would deteriorate quickly before any help would be possible.

My life got capsized as I had to reduce my studies to part-time, stop working at my job, and I ended my love relationship. All this happened because of the side effects of the drugs I was ingesting and infusing myself with. I felt like I was having all of them - muscle aches, loss of appetite, nausea, hair loss, skin reactions, anemia, aggressive behaviour, depression, and suicidal ideation. The list goes on. I went from receiving a blood transfusion every 3 weeks, to every 2 weeks because my blood count would drop consistently. I was so verbally aggressive towards my family and I was cold, distant with my partner because I didn’t want her to see this horrible, vulnerable side of me. I felt like a completely different person, one that I couldn’t even recognize or like.

I couldn’t handle more than one course at school. I didn’t have the energy to keep up with the academic demands and I was not in the best shape to stay at my job. I felt tired most of the time. It felt like I had the flu 24/7; body aches, nausea, chills. The worst was knowing how I was treating my family, friends, and my partner. It took me years to get over the repercussions of my actions and forgive myself.

But something deep within me was signaling me to do my part in this whole treatment process. It needed my full attention. I couldn’t put all my hope on some drugs that I was ingesting and injecting in me on a daily basis. I had to be strong, and be a willing participant in this journey if I had any chance of beating this life-threatening disease.

I don’t believe that we should be bystanders to our own health. If we feel sick, or unwell whether it’s physically, emotionally, or mentally we need to be active participants in our own recovery. We cannot expect some little pill to work miracles as we sit back and watch what happens. Any choice we make in this life requires an action from ourselves. It’s crucial we take this action seriously, whether it is a step we need to take to get us closer to a goal or redirecting our thoughts to set our brain on a more prosperous and nurturing path.

Our brain is the control center for our body’s success. If we think something won’t work out for us, chances are they won’t. If we think that a particular medication won’t do its job, it probably won’t. Why’s that?

Ever since Descartes, scientists have viewed physical, measurable matter as more “real”, a more suitable topic for scientific inquiry, than subjective emotions and beliefs. However, the latter has been put on the table for discussion by scientists and the medical world.

“But lately, people, including some scientists are realizing that what you believe in and how you feel can influence the outcome of your health.”

Jo Marchant, journalist and the author of Cure - A Journey Into the Science of Mind Over Body.

Research has showed us that the placebo effect is real but that is not all that there is to the story. How we feel and our expectations plays a huge role in the end results of any illness, medication, or treatment plan.

As neuroscientist Fabrizio Benedetti mentions, “the active ingredients (in the placebo effect) are complex and not fully understood but include our expectation that we will feel better (which in turn is affected by all sorts of factors such as our previous experience with treatment, how impressive or invasive a treatment is, and whether we’re an optimistic person) and feeling listened to and cared for.”

We also cannot just think we are going to get better and expect our brain to direct our body to do so without any action on our part. It plays a huge role but it’s not the sole factor in succeeding our body towards our health goals. Action is required. Once we act on our part: by researching the drugs we are ingesting, having a conversation with our physician(s) about what steps need to be in place, what our role is and their’s, by committing to the process which may include medication adherence, by making sure we get support throughout the process, by reducing our stress level as much as possible, and finally directing and redirecting our thoughts daily and continuously to stay on the path of healing, then we can say we have done everything in our power to reach our goal, to take back our health, to be in charge and a participant in our own health.

I had to face fourteen months of feeling like crap, having no energy, and watching my physical appearance and mental health change and dwindle before my eyes. I had to do something to take control. At least some control.

I asked the difficult questions to my medical team like how likely will this treatment work. What if it doesn’t work? Is there a plan B? Will I die? What can I do besides adherence to this treatment?

I also worked on my thoughts because I knew how easily they can lead me down the rabbit hole. I remember often sitting outside on the wrought-iron step case at the top of the three-story apartment where I lived. I was still living with my parents and thankfully so. Being unwell and having to undergo such harsh treatment can make it almost impossible to do so without some support close by. I would sit there during the summer months, closing my eyes, and staring directly towards the sun. I wanted my bones to warm up. I wanted the achiness and emptiness to go away. I wanted my life back. I wanted the sun to wash away all of this disease so that I could have my life back again. As I stared into the sun, I would visualize a green light coming from it and filtering into my body. It would screen and filter all of the virus that was in me. I would then let out a long, steady breath until I couldn’t exhale any more. Until my stomach was sinking inwards. I would imagine the virus expelling from me through my breath. Back then, I had no idea about breathwork. I did not know that the breathing exercise I was intuitively doing then, is used today to calm and heal people. My body knew what it needed. My brain believed it.

I kept doing this little ritual as long as it was warm enough to sit outside. I also started doing it while taking a shower. I truly believe that this visualization and breathing routine helped me with my treatment. It convinced my body that we were definitely going to reduce and eradicate this virus that was unjustly put in me. I also felt like I was doing everything I could at the time, with what I knew to get my health back. I had to keep positive and I had to believe that this treatment was going to work. But lastly, I had to let go and let God. Trust, that whatever will unfold will be for the best.

Although I would walk in scared and anxious about my blood work, I kept the hope that I was doing the best I could at the moment to fight off this disease. Every second week was like a ticking bomb for me.

“Is it going down? Is the virus leaving me? Is this medication working?”

Yes, it’s working. Keep going. Keep trekking. Not an easy task but I had to give it my all. Finally, the day came for my last blood work and I heard the most wonderful news to my ears:

“The treatment has worked Antonietta. It has eradicated the virus”, said the nurse who was following my bloodwork from day one. To this day, I get teary thinking about it. It was a long, grueling fourteen months and I did the best I could with what I knew.

So, can we alter the course of our health? Yes, we can. It won’t always be a smooth path. It will require action on our part. It will require mindful action.

Perhaps visualization may not be your go-to technique all of the time but I truly believe that your body knows what it needs. It needs you to take charge. Remember to ask those hard questions to your doctor. Be compliant with your treatment. Ask, ask, ask questions. Listen to your body. Trust in the process and most importantly, trust in yourself. You have to give it your all when it comes to your health. This also includes having a mind-body connection because your brain is such a powerful tool.