Facing Emotional Symptoms of MS Together
Living with MS, or any chronic illness, brings it’s fair share of emotional challenges. We are all familiar with the emotional roller coaster that follows the initial diagnosis or even a setback. Those of us living with MS and our loved ones have to take a crash course in dealing with the unexpected. Being able to cope with change is a necessary tool for survival, but for some of us it’s extremely difficult to do. It’s perfectly normal to go through a period of grieving, and after living with MS for several years I’ve learned that grief doesn’t just occur in the beginning. It also comes back whenever we have a relapse, experience a setback, or struggle with something that used to be easy. I always allow myself to take time to grieve, but adapting and moving on is essential to survival. It’s important that we are all able to recognize the difference between normal emotions, and ones that deserve more attention.
Sometimes depression, anxiety, and mood swings occur not only because of the stress of living with MS, but also as a symptom of MS itself. Though not well understood, we know lesions can occur in the areas of the brain that control emotion which can cause psychiatric symptoms. These symptoms are, to say the least, distressing to both the person experiencing them and their loved ones. The important thing to know is that there are effective treatments and coping strategies available.
If you or your loved one are struggling with emotional changes related to MS, I first want you to know that you are far from alone. I hope that you will use the information below to initiate a conversation with the person affected, and with your healthcare provider.
Depression & Anxiety
The symptoms of depression can vary from individual to individual. Everyone knows that depression often means that you feel down or hopeless, but loosing interest in activities that you used to enjoy is also one of the hallmark signs that something more is going on. If you feel depressed, or have lost interest in activities for more then a several weeks or even months, then it’s time to reach out to someone. Similarly, dealing with symptoms or the uncertainly of MS can lead to a lot of anxiety, frustration, or even anger at times. However, unlike a normal period of grief following a tough time, persistent depression and/or anxiety are not a normal part of living with a chronic illness.
To treat depression we often use medication, which some people are intimidated by. I try to remind my patients that depression and anxiety are symptoms that deserve to be treated, just bladder dysfunction or muscle spasticity. Increasing exercise and counseling have also been shown to be essential to improving mood and coping with anxiety. I would encourage anyone suffering from those symptoms to improve their quality of life by seeking treatment. Unfortunately, most people seek help for physical symptoms like urinary incontinence much more readily then they do with emotional symptoms. To me as a clinician all symptoms are important and worthy of treatment. I’m here to make your life better and more fulfilling, and to remind you that you don’t need to suffer in silence. Importantly, just because you start an antidepressant doesn’t mean you will have to use one forever. If you improve we can often try to wean you off of it. Additionally, certain medications such as interferons (a class of disease modifying drugs) can actually cause depression, so you should report it to your doctor immediately in case it is a side effect of your treatment.
People who live with chronic illnesses (not just MS) are at a higher risk of having a major depressive episode, and for having suicidal thoughts. You may have heard the public safety announcements that tell you to call the crises hotline if you ever feel like harming yourself. What you may not realize is that it really does save lives, in fact it saved the life of one of my patients not too long ago. It was the middle of the night and he was feeling overwhelmed. He started to have suicidal thoughts, but couldn’t bear the thought of waking his family up at 2am. He was afraid of being a burden and he didn’t want to worry them, and that fear kept him from fully opening up to the people he loved the most. However, in that moment speaking to a stranger who understood what he was going through was exactly what he needed, and I’m incredibly thankful that it was available.
If you ever feel like hurting yourself or someone else, please contact the National Crises Hotline first by calling 1-800-273-TALK (8255) or by texting ANSWER to 839863.
The MS society also has resources available to people who need to connect with others living with MS, including peer-to-peer support that can be found on their website.
Some people with MS experience swings in their mood which are sometimes triggered by something specific, but they can also happen without any rhyme or reason. Sometimes these mood swings are a reaction to having MS, but in other instances they can be caused by MS affecting the part of the brain associated with mood and behavior. These mood swings are hard to live with, and can be extremely distressing to both the person experiencing them and their loved ones. Those of us living with MS can be more easily worn out, both physically and emotionally. Luckily, there are treatments that can actually significantly improve these mood swings if you bring them to the attention of your healthcare provider.
Another symptom that can look a lot like mood swings is called pseudobulbar affect. This is when a person laughs or cries inappropriately. These emotional outbursts happen even though the person isn’t feeling particularly happy or sad. There is a specific medication called Neudexta that is used to correct the disruption in the emotional pathways thought to be the cause of this symptom.
Hopefully by talking to your healthcare provider and starting treatment, mood swings will become less frequent and easier to manage. I often get asked by family and caregivers how they can handle the mood swings of their loved ones in a more productive way. I have a few tips that may help, and I hope you will all share your experiences with one another:
- If your loved one is agitated, angry, or even aggressive take a step back and try to identify any potential triggers. Is there something else going on that could be causing their behavior? Are they uncomfortable, in pain, on a new medication, or could they even have an infection (such as a urinary tract infection)?Are they in an overwhelming or overly stimulating environment?
- Try to focus on the person’s emotions, not necessarily the facts. Arguing the content of what their saying can be counter productive, instead acknowledge the feelings that they are trying to express- regardless of whether you think they are appropriate or not.
- Move to a calmer environment, turn off the TV, go to a quiet area, and try to promote relaxation if possible.
- If behavior ever escalates take a step back and give the person their space.
- Listen to the person’s frustration, try to understand where it is coming from.
- Provide reassurance, let them know that you are there for them.
- Validate their feelings, let them know how they feel matters to you.
- Take a walk or engage the person in an activity that will help distract and calm them if possible.
- Resist the urge to engage. Avoid yelling, criticizing, or arguing even if you feel that the behavior is irrational.
- Family counseling, or speaking with someone like a pastor at your church can help work through feelings as a group. Local support groups can also be extremely helpful for some people.
I know this isn’t the most lighthearted subject, but I’m hoping that it will provide an opportunity for us all to reach out to one another. Nobody is alone in their fight against MS, all they have to do is reach out to their MultipleSclerosis.net family!1,2
Have you experienced any of these vision symptoms? (select all that apply)