A nursing student from a Canadian University in Edmonton Canada recently sent me an e-mail about my blog, he had a few questions regarding my experience with multiple sclerosis and of course I told him I would be more than happy to share!
“I am quite interested in your reaction to the diagnosis, itself. What things did the physician do correctly and incorrectly, when they were delivering the diagnosis to you. Were you surprised? Did they explain the process appropriately? In nursing, we often talk about the stages of grieving and how they apply to chronic illness. Did you find yourself cycling through stages like denial, anger, acceptance etc...”
From what I have read of other people's experiences, my reaction was probably a little different from most. There was no initial shock of the diagnosis, the reality has been slow to fully sink in and is still settling as I currently write. I've had my ups and downs excepting my diagnosis, I have had my breakdowns, I have felt much anger, much sorrow, but for the most part I think I have dealt with this experience pretty positively so far.
When my neurologist first told me what she thought I had, I was more shocked at how she delivered her diagnostic theory than the diagnosis itself. I was sitting in her small room on a very uncomfortable medical chair, she sat across from me behind a mobile computer station reading my results and typing away as I spoke of my new symptoms. Without looking up from the screen and without pausing her typing she casually said “ I'm thinking it's MS”
Now, to be honest, I had no idea what MS was. My only knowledge of MS was that I had heard the term a number of times on the hit TV show “House”, that's the first thing that ran through my head when I heard what she said, “ I don't know what MS is but it can't be good because I hear it on House all the time...”my neurologist did not even bother to explain to me what MS was, though I didn't exactly ask, so what can I say, I guess that one was on me.
By time I realized that she wasn't explaining to me what MS was, I was too angry at her for jumping to a conclusion so insensitively to ask what she was talking about. So I just kind of shook my head and went home to start my own research, that's how you have to do it now days if you want to really take care of your health, at least in America with Kaiser Permanente.
When I started learning about multiple sclerosis I honestly was not devastated the way a lot of people say they were when first learning about the disease. I can honestly say that I had a hard time not smiling and laughing because I just felt like “that's my life, just one thing after the other”. The magnitude of the disease probably just hadn't hit me yet, I already had a load on my shoulders with the many problems and obstacles in my pre-existing life and now I had this to top it all off. I think my state of mind was so sarcastically pessimistic at the time that I would've reacted the same if I was diagnosed with brain cancer, the devastating reaction was a delayed one.
About a week later, when I finally did break down, I remember I was mostly focused on my worries of not being able to do all the things I've always wanted to do in my life, I thought to myself, “ I'm only 20 years old, this is when I'm supposed to be setting up my life and experiencing all that I can experience, how am I supposed to do that now?”. I thought about how MS would affect my future career, my future hobbies, getting married someday and being able to protect and take care of my wife, having children and being able to play with them, to run with them, etc.
For the most part I've maintained a positive attitude regarding my future, I've already made the stubborn decision that MS will not get in the way of the things I want to do in life, I'm not stuck with MS, MS is stuck with me. Again, it's a frustrating disease especially for someone who has always struggled for independence, I will always have my ups and downs and I think that's normal so long as I maintain a positive attitude for the majority of the time.
As far as the delivery of information regarding the process or next course of action, I feel my neurologist was not on top of her game or organized in any way shape or form... I felt that I only got answers to questions I asked, and rather than explaining the different types of medications and how they affect my health and the disease, they handed me a bunch of folders full of literature that I had a study on my own, in fact, they could not find the literature for one medication in particular, so they told me "you can probably just look it up online". Wow, really??? So I can honestly say that 99% of my knowledge regarding multiple Sclerosis has been self-taught, it's all research that I've done on my own online, with the literature they gave me, my mom's anatomy books for college, etc. Though the nurses have always been really nice to me, I'm still not enthusiastic about my medical experience so far.
To conclude my response, I feel that the delivery of the diagnosis was horrible, absolutely no bedside manners! I'm glad that I was as mentally and emotionally strong as I was when receiving my doctor's theory because I think a lot of people would have handled it less calmly. As far as my grieving is concerned, I have not done too much research on the grieving process yet, so I don't know how my reaction would apply to the stereotypical process but I have a feeling that due to my odd attitude it might be a little out of the ordinary but like anyone else dealing with something like this I will always have my moments of strength and moments of weakness.
I hope that my story will have been of some help to you and your classmates, again, if you have any other questions feel free to e-mail them to me at any time, I will respond as soon as I can, don't worry about bothering me or anything like that, I have nothing to do all day but write so if anything, asking me a question is doing me a favor, it's giving me something productive to do!
- Matt Allen G.