Understanding That Caregivers Are Just People
When I was diagnosed with ulcerative colitis at the age of 13, I had no idea how much the way I looked at my parents would be forever changed. Long story short, I have spent over 350 nights inside of the hospital, have had 14 open abdominal operations, and have had to undergo countless procedures, tests, and just truly traumatic and violating things.
My parents were the one thing/people keeping me alive. I honest to God do not know what I would have done had I been all alone. This isn’t the time or the post for it, but the things my parents and I have experienced with the medical field would shock you to your very core.
As a quick example, I woke up from my 2nd surgery without any pain medication. Literally nothing. And the doctor’s response was “we didn’t realize she would need any!” Not to be crude, but if someone is being cut open through the center of their stomach and their intestines have been brought outside of their body, and he/she doesn’t need pain medication upon waking up from this operation than who does??
Bottom line: If I didn’t have my parents there fighting for me, advocating for me, and just making sure I knew I was OKAY and SAFE, I seriously don’t know what I would have done.
Crohn’s disease and ulcerative colitis (IBD) are incredibly complicated diseases to live with. Add to that, most people don’t understand the disease unless it is their specialty. PLUS, even if it is their specialty and/or they are incredibly knowledgable, they do really need to have at least some understanding of you and your history. Everyones’ inflammatory bowel disease is different so it is so important to have someone by your side (especially when you are very ill and cannot advocate for yourself in a productive way,) who can articulate certain things to physicians, nurses, and other people who might be caring for you.
There are a lot of bad feelings in this world but one of the worst is when your body is just going haywire, you know something is wrong, you are in a ton of pain, can barely speak for yourself, and yet you feel like the medical staff isn’t giving you what you need. That may be their fault or it may not be. As patients, we do have to ask for things in the hospital and more often than not, people do respond to us speaking up in an intelligent way about what we might need. It is still difficult to do when you are in such a vulnerable position though.
I cannot even express to you how many times I have truly been petrified because of this disease. My mom and dad being there, standing up for me, and just being present was a true make or break for me. They are the reasons I was able to fight for so many years. They are the reason I was able to finish high school (despite needing to take a year break.) They are also the reason I am a college graduate. It may have taken 6 ½ years, a lot of stopping and starting, and awfulness, but it is because of them that I have a diploma. It is because of them giving me the confidence and courage to be out in the real world when I felt up to it, that I had friends to go out with (when I wasn’t isolating myself.) It is because they filled me with hope that I continued to try and write and look towards the future; even when it seemed like there was nothing in store for me but more pain and misery.
My mom and dad will always be my heroes, but that isn’t why I wanted to write about this. I wanted to share something I have only recently realized over the past few years and that is
…my mom and dad are just, and have always been, regular people.
I put them on a pedestal and still do to a large degree because I know I wouldn’t still be here if it wasn’t for them. When I was younger, I felt like every decision they made, every opinion they had, and everything they said had to be correct. Even when things were said and promised regarding my health that didn’t pan out, I still always believed in them. I lost my faith in God about four years after I got sick. I never looked at my parents as Gods, but I looked at them as super-humans!
I know this might sound crazy but it is important for all of us to remember that our caregivers are just regular human beings doing the best they can. As most of you know, there is no right or wrong decision when it comes to our health. Our caregivers are sharing their opinion based on their experiences and knowledge. Nothing more, nothing less.
I never understood why it was so imperative that my mom run before she came to the hospital to spend the day with me until I got older. It was what gave her the mental strength to get through everything that was happening to our family. Running and possibly getting to the hospital a little later was a life saver to my mom. It was one of her coping mechanisms. I never understood that until I got a little older.
My dad gained about 15 pounds whenever I was doing poorly. We would joke about all the stuff he would eat when I was inpatient. He always felt badly about eating so much in front of me since I was rarely able to ingest anything, but I never cared. I didn’t care because I knew it was how my dad coped and I was trying to be supportive. It just simply didn’t bother me. It was only years later that I understood the reason behind it.
I guess what I trying to get at here, since there is just so much to say about family dynamics with inflammatory bowel disease, is to never forget to make sure your caregivers are okay. Never forget that they are human beings, just like you. My parents may be older and therefore, a bit more knowledgeable about life and other things, but at the end of the day, they are just human beings.