I’ve been asked, several times, how it’s possible for me to keep such a positive attitude when MS has had such a profoundly negative effect on my life. That’s a VERY fair question.
If you read my previous entry, you’ll notice that I’ve taken to personifying whatever symptom is affecting me, and talking directly to it. This is not an accident, and, believe it or not, it is not insanity either.
See, when I first was diagnosed with MS, I believed there was something wrong with me, and this lead to severe depression… because if the doctors didn’t know what caused MS, and they couldn’t fix it, odds were, it was somehow my fault.
Not only was I feeling physically miserable, but emotionally, I was in tatters because every physical ailment was potentially going to stick around forever, and it wasn’t just because of MS. It was because of me, since it was probably my fault that I had MS anyway, even though I didn’t know how I did it.
Then it got worse. I saw how badly my family and friends were affected by my illness. And since the illness was obviously my fault, I saw how badly I was constantly hurting my family and friends, simply by my continued existence with the disease. Enter suicidal ideation, stage left.
When persistent suicidal thinking enters the picture, rational thought has left the building, and it’s time to re-examine whatever situation you are in with a trained professional.
Fortunately (or unfortunately depending on your viewpoint), I was equipped to deal with this situation, having chosen to hospitalize myself for suicidal depression back in 2003… which, I now know to have been during an MS exacerbation that was pre-diagnosis.
The best thing that I took away from that experience was the knowledge that I should always trust my support network with the knowledge that I am having suicidal thoughts (because the worst thing you can do is keep it to yourself and let the shame spiral continue), and that I should always ALWAYS have a psychologist available to myself in case I needed one. So, when this occurred, I already had one in town with whom I had built a good, trusting relationship.
Dr. K (I prefer to call her Amy.) asked me a series of questions that made my life so much better.
“Did you actively choose to have MS?” Obviously, the answer to that was no.
“Can you control anything at all that the MS chooses to do?” Again, the answer is no.
“Do you have any knowledge of what the MS is going to do in your body prior to it happening?” No.
“If you could stop it, and make it go away, would you?” I just about SCREAMED, “YES!!!”
And then she said to me something that absolutely changed my entire life.
“Well, it sounds to me, then, like Multiple Sclerosis has a mind of its own, and is an uninvited guest in your body.”
Suddenly, having MS wasn’t a personal failure. I was carrying around an uninvited guest. No wonder I was so tired all the time!
Through later sessions with Amy, I learned to regain a sense of self and a sense purpose and to improve my relationships by making room for MS in my life — to recognize when I’m angry at someone vs when I’m angry at MS, so I don’t do things like yell at my mom when I should be writing journal entries.
I’m learning to honor MS’s needs by going to bed when it tells me it needs to, and eating the right foods, so I have more time to do the things I want to do.
AND, now that Dr. Zamboni’s found out about the vascular part of our disease, it’s even less likely that developing MS was my fault to begin with. Guilt = GONE.
And that’s the story of how my MS ended up with a personality, and I ended up having the disease while still being upbeat about life.