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Multiple Sclerosis and Depression
Transcript from the Multiple Sclerosis Association of America's Educational Web Video

This program is being supported by an educational grant from Horizon Blue Cross-Blue Shield of New Jersey. Welcome to the Multiple Sclerosis Association of America’s educational web video, Understanding Depression and MS. Joining us today is Allison Shadday, a medical clinical social worker and an expert in the field of counseling chronically ill patients and their families. Ms. Shadday is also a person living with MS, since her diagnosis in 1995. Ms. Shadday, welcome to the program. Can you tell us a little about your professional career and how MS came into your life?

Sure. About 14 years ago, I was working as a medical social worker in home health and at the time I was actually caring for many MS patients. Ironically, around that time, I began to be bombarded by a series of my own neurological symptoms. This included optic neuritis, numbness on my right side, extreme vertigo. I was having difficulty driving with my right foot because of weakness in my calf and being a medical social worker, I recognized that these could very well be symptoms of MS, which was actually really terrifying for me.

I was 33 years old at the time, but I felt I needed to go ahead and pursue this. I set up an appointment with a neurologist, I had an MRI completed and, in fact, the diagnosis was confirmed. And I want to be very candid about how I responded to this because I think it’s very validating for other folks who may be going through the same thing. I went overnight from being a caregiver to a patient and this wasn’t a comfortable role for me at all.

And basically, I went through probably the toughest year of my life that first year adjusting to the fact that I had multiple sclerosis. I did seek therapy, I did get on antidepressants. It took me about a year to really integrate the concept of having MS into my life and to catch up psychologically with the diagnosis. But I came out the other end of it after about a year and felt that I had really learned a lot and also had a unique perspective that I could offer other people who might be going through the same thing.

I developed a level of empathy and compassion that I don’t think a lot of other mental health professionals necessarily had, having not gone through a similar experience. So I started a private counseling practice, specializing in treating folks who were also dealing with the emotional impact of chronic illness and I’ve treated, since that time, hundreds of patients with MS and their families and I’ve learned a great deal from my patients. They’ve been incredibly inspiring people.

In fact, what has come out of all that is I’ve written a book called MS and Your Feelings – Handling the Ups and Downs of Multiple Sclerosis, which just came out a couple of months ago and it’s really a compilation of all of the things I’ve learned and that the patients have taught me about how to live well with this disease and handle the emotional impact.

Our topic is depression and MS. I think so many of us may confuse sadness with depression. Can you explain the difference between the two?

Well there is a significant difference between sadness and depression. Sadness is a very normal and typical emotion that we will all experience at some point during our lives. It’s a reaction in proportion to an event that’s occurred, a loss or a tragedy and generally it lasts for a few days and then we get back to feeling our normal selves and we gain our spirit. Depression is another animal.

Actually, when we feel depressed, a lot of folks don’t really know even why they’re feeling that way. There may not necessarily be an actual trigger that causes the depression. When patients come into my office, they’ll throw their hands up into the air and say, I don’t know why I’m depressed. The other significant difference is that depression is going to last a lot longer than sadness.

What are the different types of depression and their respective symptoms?

There are a few different types of depression. The one that people are most familiar with is the major depressive episode. Generally, you will experience about five different clinical symptoms and those will be required to actually have a diagnosis of a major depressive episode.

Those might include feelings of extreme fatigue, folks may have difficulty getting out of bed, feelings of hopelessness, worthlessness, low self-esteem, a general depressed feeling, just not being able to enjoy activities any longer, maybe a change in your weight, appetite, feelings of restlessness, agitation and the most serious is feelings of either suicide or wanting to harm others. And generally you’ll experience these symptoms for at least two weeks or longer.

The next type of depression that people aren’t as familiar with is called dysthymic disorder and I describe this as more of a low-grade, but chronic type of depression. This generally lasts two years or longer. And oftentimes people aren’t really even aware that they’re experiencing this depression because it’s insidious and it lasts for such a long time, they begin to think that this is their normal state of mind. The symptoms will be similar to what you would see in a major depressive disorder, however, they may not be as severe.

Often with major depressive disorder you’re going to have trouble actually functioning, getting out of bed and what have you. With dysthymic disorder, you’re generally able to function and get along in life, but you’re really not enjoying at the level that you should or could be.

The other type of depression is what we call bipolar disorder or manic depressive disorder. And this is what it sounds like. When someone has a manic episode, they have a tremendous amount of energy, they may not require really any sleep at all, they sudden bursts of extreme creativity, but also very inappropriate behavior. You may see compulsive gambling, inappropriate sexual activity, wild spending sprees and then people crash and they come down and that’s the depressive side of the manic depressive.

And then again, you’re going to see the depressive symptoms that I’ve already mentioned. In addition, there’s one other sort of unique depressive incident that you can see with people who have MS and that’s called IEED. That is basically affects about 10% of people with MS and it’s not really clinical depression, but it’s an inappropriate response to external events where people may cry uncontrollably, or laugh uncontrollably and this may have no relation whatsoever to the external events that are going on. So that’s another sort of lesser known emotional reaction to the disease.

Can you talk about the prevalence of depression in the general population, as well as within the MS community?

Generally about 10% of the population is really prone to experiencing depression at some time in their lives. That comes to about 18 or 19 million people in the United States who will at some point experience depression. I recently saw a statistic by the World Health Organization that said 121 million people worldwide will at some time experience a depressive episode. However, when you look at MS patients, the risk is extremely high, up to 50% of people will experience depression at some time during the course of their illness, and this really puts us at a much higher risk than the general population.

So why are MS patients at such a high risk for depression?

The easy answer when you ask why are MS patients at a higher risk for depression is to just say, well, why wouldn’t they be? It’s a very challenging disease, it affects us on every level, every aspect of our lives, but again, that is the easy answer. When you look at folks with other chronic illnesses that are equally as disabling, or even more disabling than MS, we don’t see as high an incidence of depression in those folks. So then we have to sort of look a little deeper and ask a few more questions.

So why is it that it’s higher with folks who have MS? And there are several factors. There’s still a lot of research going on around this area. People who have MS are often taking a lot of medications. Sometimes these medications can make them more susceptible to depression, especially steroid treatments. Oftentimes when you’re on steroids you’re going through the roof when you’re on them, but then when you are taken off, you can really crash.

If you have a predisposition to depression, you’re going to be at a higher risk at that point. More research is being done now also in terms of how disease activity may actually cause depression. If you are having lesions and disease activity in a certain part of the brain that affects mood, it’s a natural conclusion that that may also give you a depressed or influence you in some way emotionally.

What are some of the ways depression affects people with MS?

Depression affects people with MS on many different levels, just as MS affects people on many different levels. It can put a terrible strain on families and relationships. I often have family members who come in and they say, you know, I’ve learned to live with the MS symptoms, I can handle the physical stuff, but I can’t live with her while she’s depressed and you need to fix this. So it can really challenge relationships. It can impair sexual desire. It can make people become very isolated and that in turn makes family members feel shut out and disconnected.

In severe depression, folks may not be able to take care of themselves. Getting up out of bed can seem like an overwhelming task, taking a shower, preparing a meal, caring for a child, all of thins can feel impossible when you’re really under a cloud of depression. When people describe what it feels like, they say exactly that, I feel like I’m in a dark cloud, or that a dark cloud has invaded every cell in my body. It’s shutting out hope, it’s shutting out any feelings of excitement or future possible happiness.

And that’s a big issue for people because this hopelessness and this feeling that it’s never going to get better is really damaging. But that’s true for most anyone who has depression. Where it becomes even more dangerous for folks with MS, in my opinion, is that when you’re depressed, you’re much less likely to comply with your medications. You’re less likely to make it to your doctor’s appointments. The idea of getting exercise or eating well, getting good sleep, all of those things are going to be much harder to do when you are also challenged with depression. So you’re putting your MS symptoms at a higher risk when you’re depressed.

Also, I talked a little bit about how you suffer from fatigue, also cognitive difficulties, insomnia, these are signs of depression, but they also mimic symptoms of MS. So if you’ve got these symptoms anyway and you overlap depression on top, you’re really getting a double dose of trouble. I’ve also had patients come into my office who will say, the MS is causing me to have these cognitive difficulties, it’s causing fatigue and low and behold when we treat the underlying depression, the MS fatigue and cognitive difficulties disappear because, in fact, they were related to the depression all along.

I think it’s great that we’re learning so much about this topic and I’m sure our viewers want to know, is depression treatable?

Well, now we’re getting to the good news. Depression is very treatable. In fact, it’s one of the most treatable of all MS symptoms. But I want to emphasize, you must let someone know that you are depressed to get the treatment. And this is a stumbling block for a lot of people. Unfortunately, even in this day and age, there’s still a stigma attached to mental illness in our society.

And what I find is it’s often very difficult for patients to raise this issue with their physicians, particularly, especially they would need to talk to their neurologist about it, even if it’s mild, when they have these emotional symptoms, they have to take the responsibility to bring it up or else it will never get treated. On the flipside, physicians are just like humans, just like all of us and oftentimes they’re more comfortable talking about the physical symptoms and so they’re not as likely to ask about the emotional aspects of the disease.

When you walk into a doctor’s appointment and you have MS, there’s going to bet a host of physical things to focus on. So it’s really up to us to raise our hand and let our physicians know when we are experiencing the different symptoms of depression. If it’s tough for you, what I would suggest is writing it down. If it’s difficult to say it face to face, get out a piece of paper, write down what some of the symptoms have been and share it with your doctor that way. That’s the only way you’re going to end up getting help for your depression.

So now that we have the good news that depression is treatable, what are the various types of treatment?

Whether you’re suffering from mild, moderate or severe depression, the first line of attack is generally to look at antidepressant medications and that would mean talking to your doctor about the different options that are available to you. Fortunately, we’ve made a lot of progress over the last several years in terms of antidepressants and our way that we treat depression, just as we have with MS medications. So that’s the good news.

All the studies and research indicate, however, that antidepressant medication alone is never as effective as working with a counselor in conjunction with the medical treatment. And there are several options out there for folks. You can talk to a psychiatrist, a psychologist, a counselor – it really doesn’t matter what the profession is or what the degree is, however, if you’re really dealing with a lot of complicated medication issues, I would recommend talking to a psychiatrist because they are able to do med management and work with people in terms of prescribing medications.

Where I think the important piece comes in is really the feeling that you have when you’re with this other person. You want it to be a good fit, you want to feel that your counselor is listening to you, that they’re understanding your concerns, that they’re empathetic. All of these things are critical in terms of you being comfortable and sharing your innermost feelings.

The other thing that I think is very important is if you can find some type of mental health professional who has a background in treating people with chronic illness and if you can find someone that knows a little about MS, that’s even better. Oftentimes your neurologist will have a list of practitioners in the area that they can refer you to. Many of the local MS Society chapters also have lists of folks who have gotten training in multiple sclerosis and are also mental health professional that they can refer you to.

So those two things, the medication and therapy in conjunction with each other are very important. I would like to make a point, however. When you start on an antidepressant medication, it often takes four to six weeks for it to begin to take effect, to actually get into your system. So don’t give up. Don’t take a few pills, say it doesn’t work and walk away.

You need to stick with it and sometimes the first choice of treatment isn’t effective and you may need to experiment and work with your doctor to try other methods, but I can assure you, it is working towards – because once that depression lifts, you’re going to feel such a great amount of relief that it’s worth the effort.

And finally, Ms. Shadday, what are some of the positive steps people can take to mange and treat their depression?

I think it’s important for patients to know that there are many steps they can take themselves to relieve some of their depressive symptoms and also to just simply live well with this disease. I encourage folks to be proactive, to get information, to get on the Internet, to learn all they can about MS.

Attending educational events – there are many of them out there, from the drug companies to MSAA, to the MS Society – all these folks are putting out events that are available. Normally they’re free of charge. So I encourage people to take advantage of those different educational opportunities. The other great benefit of that is that you get to meet other people with MS and this is a huge relief for people, when they actually get to connect with other people who are going through similar problems as they are.

I think that oftentimes MS patients feel very misunderstood. This is a difficult disease because oftentimes the symptoms are invisible. So people look at you and they think that you’re just fine, when actually you may be suffering from a variety of different symptoms. And so there can be a lot of misunderstanding. But when you’re sitting down next to someone else who also has the disease, it can be very therapeutic and very healing to do that.

Sometimes you can develop relationships that will continue on after the event and you can help to support each other. There are also simple things like eating well and exercise, maintaining a good sense of humor and simply staying connected to others, whether it’s your family, your church, your community. Over and over again, the people that I see that really handle this disease the best and cope with it the best, are the ones that stay active stay involved and stay connected.