Dr. Nafisa Jadavji, a Neuroscientist talks through her journey of going from a completely 'healthy' person into needing regular hospital visits till date. Can you still live well under such circumstances?
I think the biggest thing that sucked about being diagnosed with a chronic disease was that I had been pretty healthy for most of my life. Yes, I have a couple of colds, a case or two of bronchitis, but these were all temporary sicknesses and the end point was in sight, whereas with a chronic condition there is no end.
It all started at the end of my PhD when I suddenly lost my appetite and had a hard time keeping food down. At first I thought I just had a virus, but after five months of not eating regularly, seeing walk in clinic doctors who thought I was seeking attention and taking antibiotics for over 3 weeks with no reduction in symptoms, I knew something else was wrong. Luckily, I was doing my research for my PhD thesis in a hospital and was able to get into see a gastroenterologist specialist fairly quick after I admitted to myself something else was going on. The diagnosis of Crohn’s disease took a few months after the initial colonoscopy and biopsy samples were analyzed. For some weird reason I always had a fear of getting ulcers and then my fear came true, life is strange like that!
I remember when I found out, I was relieved at first because not knowing was terrifying, so at least I knew what I had and could make a plan.
After the news sunk in I was pretty scared, I had a disease that did not have a cure. Would I always feel so exhausted? Could I ever eat at a restaurant again without getting sick? Would my body be able to support a baby? Would I ever have a social life? At that point in my life I would work in the lab from 8am until 2pm and then spend the rest of the day at home recovering. I remember I wrote most of my PhD thesis in lying in bed, because I was too exhausted to sit at my desk and could only work in 1 hour chunks before needing to rest. At the same time as writing my thesis I was also writing grants to get funding for my future postdoctoral research and ethics applications to do this research. I was so overwhelmed and a wreck for the first 8 months after being diagnosed.
Unfortunately for me, after my diagnosis, my symptoms kept getting worse, I kept experiencing more and more pain. There was nothing I could do to stop it.
I had a very hard time communicating the amount of pain I was in to my specialist because it’s invisible.
There is no machine that can measure how much pain you are in, you can only say ‘I am in pain.’ I was a wreck, I cried in my gastroenterologist’s office every single time I saw him as well as every day because I felt like my whole life had fallen apart and was completely overwhelmed; my health had been taken away from me, just like that! We tried a few medications, things for irritable bowel syndrome (IBS) and then I took steroids for a while and nothing helped. I altered my diet, removed caffeine, gluten and lactose as well as I met with a naturopath, acupuncturist and did regular osteopath treatments, all in an effort to manage the pain. Nothing was helping with the pain; it was mentally and physically exhausting.
At least my dietary changes had managed the other symptoms associated with Crohn’s. Gradually over time I began to have trouble walking and going up stairs. At the time I was living in Montreal (Canada) and taking the metro to the lab every day and I also lived in a three story walk up in Plateau, so I had my fair share of stairs in my daily life. I felt completely helpless. I mean, I had not put on an excess weight so I didn’t understand why it had suddenly become so hard to walk up sets of stairs. Luckily, I have a medical/science background and was able to do understand the Crohn’s literature and figured maybe the inflammation in my intestine had spread to other parts of my body. When I saw my specialist next I mentioned how I hard it was for me to walk up a set of stairs and was referred to a rheumatologist. The MRI test confirmed my symptoms, I had developed some arthritis around my pelvis. This also prompted my specialist to do more extensive examination of my bowel and whether the inflammation was in other parts of my GI tract that perhaps the colonoscopy could not see, so I underwent a capsule endoscopy. This is when I swallowed a capsule with a camera it took pictures of my whole GI tract, starting from my mouth and it was discovered that my small intestine was what I like to call ‘on fire’ (a.k.a there was a ton of inflammation). So I began a course of immune suppression treatment, the first medication made me ever more tired, it actually made me anaemic and the tiredness was a side effect. After more testing, I was started on Humira (Adalimumab) and at the same time I was moving to Berlin, Germany to begin a postdoctoral fellowship, so it was a very stressful time, but I managed.
My body responded for about 2 years, but after moving back to Canada it was discovered that I had developed antibodies against Humira, so it was no longer helping me.
In the fall of 2015 I started Reimicade (Infliximab), it felt like another loss to the disease, but I tried to think of it as a new adventure and be positive, well somewhat. Reimicade treatment in Canada works via infusions, so that was another adjustment, with Humira I just injected myself at home, so in a comfortable and private place. I was terrified going to my first infusion, I was in a new city and didn’t have many friends, so what would happen if I didn’t respond to the medication well? Who could I call to ask for help? I had done a lot of reading about the medication beforehand and was very anxious, but I ended up surviving my first infusion and just recently had my sixth infusion. The infusions take about 3 hours and they happen every 8 weeks. I have turned these infusion days into sort of chill days, I make sure to not plan anything, treat myself to a lactose free Chai Latte from Starbucks beforehand and afterwards lunch one of my favorite restaurants in the city. I then spend the rest of the day relaxing and doing whatever I want, no pressure.
I am trying to take this super stressful situation and have turned it into a ‘me’ day. As a scientist I know how harmful stress is to the body, so my try and keep my stress levels down and focus on all treats that come along with my infusion.
Recently, my new specialist checked an inflammation marker in my stool and my levels are down to ‘normal.’ For the very first time in four years I feel like I have one win against this chronic disease! My inflammation is down and I feel great (most of the time)! I still have bad days where I am exhausted or in incredible amounts of pain. I still have to be mindful to not over exert myself at work and sometimes I have to say no to friends, but I finally have a win! The feeling is priceless, I will hold on it for as long as I can, because I know that the next time the news might not be so great.
What I discovered after being diagnosed with a chronic illness is that your disease does not define who you are. I didn’t let it hold me back, maybe because I am very stubborn, but I still moved to Germany and continued with my life.
The diagnosis, also gave me an opportunity to figure out what is important to me, I re-evaluated what I valued in my life and have definitely changed my proprieties.
Including a lot more self-care, I don’t like that word, but it is very important! I have also learned to be critical of what I am told about my disease and health. For example, while I was living in Germany I was told that I could not get pregnant until I was free from inflammation for 4 years! So basically never, this hurt a lot. I did my homework and could not find the evidence to back this ‘fact’ up so I didn’t believe it and my new specialist also confirmed that it was not true. Have a chronic disease does suck and it takes years to adapt, but it’s not all bad, all the time.