Today my boyfriend and I went on a nice, romantic date to my treatment clinic.
Since my hospitalization in April, I have been receiving Remicade (also known as Infliximab) – a type of chemotherapy and biotherapy drug. After a long run of trying different medications to manage my symptoms and pain, this treatment course was one of the better options. It allows me to function as close to normal as possible (on most days). But it has still left me with nausea, abdominal pain, migraines and muscle and joint pain that inhibits me from walking and makes me feel like a 90 year old (no offence Grandma, love you).
Now I like to look at things in a positive way – considering the circumstances in my life like trying to complete an undergraduate degree in a competitive program as well as volunteering and trying to live my life like a normal 20 year old would want to, this is the best short-term option for me. I say short-term because although some of my symptoms have cleared, the side effects that I deal with on a daily basis are harsh.
I receive treatment monthly via. intravenous infusion (IV) over the course of two hours. Currently, I’m sitting in London patiently awaiting the clock to strike 3:15pm so that I can no longer feel faint and short of breath. After this I’ll put on a mask because my immune system will be close to depleted and I’ll get a ride back home and spend most of the day laying on the couch with heating pads to help my joint pain and hoping I don’t get sick.
I like to consider myself as one of the lucky ones – and for the ten minutes that I started to feel bad for myself – today’s treatment session altered my feelings.
As I’m typing this, there are 2 paramedics in the room who are here to pick up a woman sitting in the chair directly behind me who has had a reaction to the medication and is now being rushed to emerge. I’ve had scares with medication that have begun to close my throat but I have not had to endure what she currently is. I have not had to have surgery, I do not have an ileostomy, I’m still in school and I still smile on a daily basis.
But like George Elliot says “don’t judge a book by it’s cover”.
We all want to be normal – society pressures us this way. But what society does not take into account is the percentage of people that look normal on the outside but their insides have a different agenda. It’s called an invisible illness. The cookie-cutter image of someone who is healthy, smart, somewhat stylish with no detectable problems in their life is what many of us strive to be (and how all of our Instagram pages appear) and many people with invisible illnesses get treated as if all of this were true.
Now, I like to think I have a good head on my shoulders and I take time in the morning to look presentable daily – this is not me telling you to treat me like a baby or as if I’m a potato (although some days I do feel like one) but I do ask everyone to realize that my health is not up to par with yours.
Now part of this is my own fault. I smile – LIKE ALL THE TIME… especially when I feel like crying. During my hospitalization, I found out I was allergic to a drug due to receiving it through an IV and shortly being unable to breath, my hemoglobin levels had dropped severely and I received an immediate blood transfusion, my stomach was distended and painful ultrasounds and scopes were done to see what they could do, I got blood taken every other day, I was given a shot for pain that made me sick which resulted in receiving Gravol through an IV to make me sleep it off and overall, it was probably one of the worst weeks of my life. Yet somehow when visitors came – these photos were still able to be snapped. My doctors told me I had to quit smiling because they were unable to properly assess my pain level. They would’ve sent me home a day earlier than appropriate for my case because of it.
Some days I really do feel 90%, on those days you see me and you’re probably conversing with me. I’m able to go to all of my lectures, volunteer and go out and see my friends. But the problem is that I can switch from 90% to 20% very quickly – within ten minutes of talking to me I may be too tired to say a word and the pain comes out of nowhere. This is when I ask you to be understanding. When I change my mind about going out, when I no longer want to go for lunch, when I don’t want to talk – this is why and I too, wish it wasn’t happening.
My point is that it shouldn’t take me dropping twenty pounds and losing all of my hair for people to realize that I’m chronically ill and unable to do everything I used to be able too.
We’ve all struggled with something in our lives – many of us still are. Many struggle much more than I do in regards to health and I’ve come to realize that I need to ask myself ‘how can I be the healthiest, happiest, most whole version of myself while living with Crohn’s disease?’ I try to align my actions with that question everyday and continue to live the best version of my un-normal life.
We all face hardships. Nobody is immune to that – let’s just all learn to become more aware of what other’s are going through and make the world a tiny bit brighter by doing so.
Normal is overrated anyway!