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.

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Comments

View Comments (8)
  • maggydoots
    2 years ago

    Thank you for putting this into words. I GET it! Maybe others will, too. Hopefully, those suffering, like myself will feel.less alone by reading this.

  • Matt Allen G author
    2 years ago

    And HOPEFULLY, there will be a better solution to this soon!

  • tfs
    2 years ago

    I think it is very interesting that I hesitate to comment on this article. Stigma to be certain. There was a very excellent public forum held a few weeks ago with Dr. Anthony Feinstein. It is well worth listening to. We need to be very assertive with our mental health issues – it’s all circular. Dr. Feinstein reminds us that depression can be treated with meds, cognitive therapy, body/mindfulness, and encourages us not to isolate ourselves. Excercise – and I know that seems impossible from a wheelchair, is also important. Depression is not easy and certainly is a symptom of MS. I am fortunate to live close enough to a major centre that has neuropsychiatric facilities. It is the most difficult symptom. It is treatable, and we need to remember that. I feel a bit hypocritical because I cannot always push myself. I think the single biggest problem is isolation. These forums play an important role.

  • Matt Allen G author
    2 years ago

    I hate that there is a stigma, it slows down the progress of people getting help I think. But yeah, isolation is a bg one

  • pmdpeace
    2 years ago

    It’s great to read another one of your thought provoking posts. I’m always moved by your raw openness when you write. You’re a voice for so many of us who don’t write. Yes, you are absolutely right. MS isn’t just about the physical. It’s systemic that also includes emotional and mental health.

  • Matt Allen G author
    2 years ago

    That really is my goal, speak for those who can’t for w/e reason

  • Dimitri
    2 years ago

    Good point.

    It took awhile for me to realize that whatever I was experiencing it will get better. It felt like I was loosing my mind and I had a strong desire to make it stop by just jumping in front of a transport truck. For me personally, escitalopram saved my life.

  • Matt Allen G author
    2 years ago

    I know how you feel/felt. Meds saved me a great deal of pain

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