Emotional Pain in MS and a Lack of Proper Care
People who have been following me for a number of years may have noticed a pattern. For a while I am really active online and then randomly, out of nowhere, I disappear for weeks or even months. When I was about 17 or 18 I was diagnosed with a pretty bad case of clinical depression. Sometimes I wonder if that had to do with my Multiple Sclerosis? After all, when my current neurologist looked at my first MRI scans he said that there was clear evidence that MS had started doing its thing in my early teens. So anyway, that is why there is a pattern of me coming and going, depression and other mental stuff. For the most part, I have had it all “under control” but every once in a while it definitely overcomes me. Now before I go on I should try to make something clear; with clinical depression, it is more of a chemical imbalance in the brain, so I (for example) will wake up feeling terribly depressed for no reason. Nothing triggered it, I don’t know why I am depressed, I just feel… horrible. Then there is more of a “situational depression” and in my eyes? That is “normal”. Something bad happens in life and we feel depressed about it. It sucks but as human beings, we are supposed to have these types of feelings in response to various situations.
MS and depression
OK, so none of that is really technical, I just want to make clear that there is a difference between the two types of depression. But either way, for the sake of this post, both are pretty common in MS and it makes sense. You have a disease that is attacking the brain and as far as I know the brain is what controls emotions and mood so… yeah… biological depression. People will feel depressed for no reason. But then there is obviously a situational aspect to this. You have MS, everything is changing in your life, your body might not be working properly or you may be in pain! To name just a few examples. So yeah, that sucks and is an easily justifiable reason to feel depressed. In my case (and many other’s I imagine) I am sometimes hit by both at the same time and when that happens I tend to disappear.
MS treatment focuses on physical symptoms
In my most recent bout, I came to realize something. In the world of MS, there is a lot of emphasis put on the clinical side of the disease, as in reducing annual relapse rates, reducing long-term disability, and maybe improving you EDSS score. The physical stuff. But when it comes to anything else like depression or any sort of “disorder” that affects your emotions or your mood or anything like that, often all you will get from your neurologist is a pill and a wish of good luck… It has become more and more apparent to me that in a lot of cases, the physical side of MS is only half the battle and at least for me? All the physical stuff I have to fight every single day is nowhere near as devastating as the stuff going on in my head.
Seeing a therapist
“Therapy! You need to see a therapist!” is what I am told when I bring this up to people. But I don’t know, maybe it’s just the insurance I currently have… and the insurance I had before this, and the insurance I had before that but trying to get in to see a therapist? It’s nearly impossible! It’s like there is such a high demand for that service that they try to make it difficult for you to get an appointment and often when you finally do? It’s like 3 months away! I know it’s not their fault (as frustrating as it is) because like anything else it boils down to supply and demand and unfortunately when it comes to mental healthcare, there is a ton of demand but very little supply and this applies across the board, not just for people with MS. So my point is this, more emphasis needs to be put on the “mental” or “emotional” side of treating MS because that can greatly affect one’s quality of life as well as their physical health. I know there are lots of little programs you can get into for this kind of help or treatment but it’s not enough, especially when most people are not even aware that these things exist! So much more has to be done because despite the fact that not many people like to openly talk about this stuff (myself included) I have, over the years, caught little glimpses of these problems in the lives of many people who have MS and it makes me sad. It makes me sad because I feel like no one should have to feel the things I have felt and what’s more frustrating for me is that I don’t always know how to help. I don’t even know how to help myself! So again, my overall point is this, we need to put a lot more focus on the mental health side of MS because a simple pill (though a great help that saves lives) is not always enough.
Do you have a fear of needles and take medication that requires injection?