A common misconception with MS is that the disease affects the body mostly in just the physical sense. This can be true for many diagnosed. However, one’s mental health may be impacted as a result of MS too. MS and its unpredictable nature can create a roller coaster of emotions, changes, and ups and downs for those affected. That kind of ride can impact all parts of one’s mind and body. Understandably so.
It’s not always easy to recognize or bring attention to mental health symptoms and changes that MS can produce. Some living with MS may not even realize that what they’re experiencing can be related or connected to the disease at times. And going to the doctor to talk about symptoms can be tough. Especially if talking about sensitive issues you might be hesitant to bring up. But it’s important to talk about any changes in thoughts, feelings, mood, sleep, appetite, interests and other things that are concerning to you or your loved ones. Recognize if something doesn’t feel right. Don’t question yourself. Trust your judgement and reach out to ask about it.
MS can weigh heavy on those diagnosed and impacted by it. It comes with its own agenda and wants to take control. It’s not considerate of your plans or feelings. Thoughts about what the future will look like with MS, what can or can no longer be accomplished, what’s been lost or taken. These are all overwhelming and intense issues. Completely understandable. MS is something you didn’t ask for. You’re not alone in experiencing these thoughts. It can be unfair and cruel and mind consuming at times. That’s why taking care of your mental health needs is just as important as managing your physical care.
It can be frustrating when people don’t understand MS or all that it can influence. Not to mention how exhausting it can be trying to explain it. Or to defend why you’re feeling a certain way. And that MS can consist of more than physical symptoms. So, talking about it and communicating with others who take the time to understand and support how you feel and what you’re going through is crucial.
Along with your MS care team, finding a mental health professional who specializes in chronic illness and who has perhaps worked with other clients living with MS or has knowledge of the disease can help. While MS itself is not a specialty in the mental health field per say, there are professionals who have a greater awareness of the disease and have experience treating mental health issues that can be associated with it, including symptoms of depression and anxiety.
While MS likes to think it has full reign, taking control of your health decisions and how you approach your care needs will give you more power to manage MS symptoms. Talk about things, journal if that helps, and keep a record of your symptoms. Communicate difficult thoughts and feelings you’re having, especially if something feels off. You may not always feel like yourself but if you’re noticing changes in your emotions more often, bring it up with someone you can confide in. You deserve to be taken care of, in body and mind.
The Mind, Body, and MS Connection
To continue the conversation about wellness during MS Awareness Month, MSAA invites you to participate in the following activities:
- Read the transcript from our Ask the Expert program with Annette Okai, MD on “Wellness and Healthy Living with MS” on My MSAA Community
- Register for the live webinar “The Importance of Wellness Care in MS” coming up on Tuesday, March 10, 2020 from 7:00 – 8:00 PM Eastern.
- Listen to the latest episode of the the MSAA Podcast “A Little is a Lot When Exercising with MS” with guest Brian Hutchinson, PT.
I have been taking Rebif shots since 2008 & before that Copaxone & before that Avonex. I’ve been on shots since 1997. My body just can’t take the shots anymore. I asked my doctor & he wants me to take Aubagio. My husband has died & I really have no one to talk to about this. I am 66 & have started to decline in the last year. Would really like to know if this is the best medicine to go to. It’s silly I know but you lose hair taking this drug & I don’t think my mental state could take that too. I’d really like someone who knows to help me make this decision. If you could help me or point me in the direction I should take, I would truly appreciate it.
Thank you for reaching out, Susan. I am very sorry for your loss and I hope to offer you some resources that can hopefully help. Trying to decide which MS medication to take can be hard, especially because MS and its treatment effects can be a different experience and unique to each person. It might be helpful for you to talk to others living with MS to get some more personal perspective and feedback when it comes to treatment outcomes. Again, keeping in mind that each person’s reaction to medication can differ, it still might help to discuss this with others who have experienced it firsthand. You can connect with others through MSAA’s online peer support forum called My MSAA Community, https://mymsaa.org/msaa-community/my-msaa-community-forum. Here you can pose questions to members living with MS and find support and camaraderie, you do not have to go through these processes alone. If you have concerns about Aubagio and its potential side effects, you can also talk with a nursing professional on their patient assistance line at MS One to One for more information, phone (855) 676-6326. There are also other oral MS treatments you can research and mention to your doctor, if you have reservations about Aubagio, https://mymsaa.org/ms-information/treatments/long-term/. Make the best decision for you with the information you receive and hopefully you can work with your doctor to find an alternative treatment that will be effective for you. If you have additional questions please email MSQuestions@mymsaa.org for more information and resources. Thank you again for reaching out Susan and I wish you the best with your care. Take care, Angel, MSAA Client Services Specialist