How to Handle Anxiety While Living with Multiple Sclerosis

I’ve lived with symptoms of multiple sclerosis since 1981, was diagnosed in 1986 and thereafter settled into a steady life of numbness, weakness, fatigue and cog fog. After years of struggling with and managing my disease, I thought this would be how my MS would remain.

The school of thought about MS

Please don’t judge me but bear in mind that I was diagnosed at a time when the following was the school of thought about MS:

• The first two years of the disease’s course was how your MS would always be (eg. if your course was relapsing for two years it would always remain so.)
• The risk of children inheriting MS from a parent was less than 1%.
• Pediatric MS was rarely discussed or acknowledged.
• Complementary medicine was not discussed or recommended.
• A cure would occur in five years (my doctor’s advice.)

The course of relapsing-remitting

Today this sounds archaic. Fortunately, three decades is a long time for advances in medical research to change how a disease is diagnosed and treated.

As the years passed, my MS followed almost the same course of relapsing-remitting except for several full-blown exacerbations and some bothersome symptoms. My daily struggles with walking, numbness, weakness, and fatigue were managed with complementary medicine, (i.e. yoga, meditation, acupuncture, supplements, traditional medicine) and a healthy diet.

Intense levels of anxiety

After age 50 I began noticing changes that included bladder, bowel, and anxiety. The intense levels of anxiety, as I got closer to 60, threw me for a loop. It was startling and paralyzing, stopping me from enjoying life and being as productive as I’d like to be.

One recent event comes to mind.

I was invited to attend HealtheVoices19, a conference to empower health advocates from across the country, Canada and one person from Scotland. I was honored to be chosen from the 320 applications reviewed. But a week before flying to Dallas I began experiencing anxiety.

Growing anxiety

I didn’t know many people going and it’d be the first time attending an event for advocates outside of the MS community. There were advocates with HIV, cancer, stroke, rheumatoid arthritis, chronic pain, rare diseases, heart issues, lupus, epilepsy, and many more.

I was excited to learn how to become a better advocate while meeting new and interesting people. But still, my heart raced whenever I thought about it. I dreaded traveling alone since I’m used to traveling with my husband. My heart would have raced even more if I knew what a debacle getting a wheelchair in the Dallas Airport would be, along with a 4-hour delay in takeoff (plus some scary turbulence).

The worries went on and on and on

I was also anxious about meeting new people when it seemed that many of them already knew each other. Being the new kid on the block, even at my age, isn’t always smooth sailing.

I never worried about these things when I was younger but as I aged that changed. I thought the older you get the less anxious you become. Silly me.

I dreamed up every excuse not to attend. I’m not feeling well. My IBS is acting up. What if I don’t feel well on the plane. My enlarged kidney stone was bothering me and there’s no ER in the friendly skies. On and on and on.

Psychological symptoms of anxiety

I didn’t sleep well, had trouble focusing, began experiencing feelings of inadequacy and was overthinking the trip. These are all examples of psychological symptoms of anxiety.

The arguments I use to combat anxiety

Then I got a hold of myself and looked at my face in the mirror. It might sound odd that I talk to myself but I do when I need to. It’s worked for me in the past when I needed it most. Here are some of the arguments I made:

• Would I be better off attending the event for both personal and professional reasons?
• Was I strong and resilient enough to face my fears?
• What was the worst possible thing that could happen and what would I do if it did?
• What was the best possible thing that could happen and how would I feel if it did?
• How proud would I feel about myself if I attended the event?
• What was the best way to introduce myself to fellow advocates?
• Would it benefit my online followers to attend the event to learn how to better serve their needs?
• How could I best serve my own needs by attending this event?

The answers to these questions got me on an airplane and off to Dallas. I admit to packing extra Xanax, L-Theanine and Holy Basil in case I needed them for sleep and anxiety. But in the end, out of the three, I only took L-Theanine a few times over the five days I was away.

I'm still a warrior after all these years

I felt victorious. I enjoyed the conference, learned a lot about exciting and interesting ways to advocate for others, and enjoyed the camaraderie of the attendees.

I also learned more about myself. I am still a warrior after all these years and remain strong and confident about the work I do. A win-win all around.

Anxiety disorders are common for those with MS

I know my story is not the same as others who experience their own versions of anxiety. Anxiety is a serious and often debilitating psychological monster to face and needs to be taken seriously. According to the Multiple Sclerosis Association of America, an estimated 43 percent of people living with MS suffer from anxiety disorders that can include panic attacks, phobias, obsessive-compulsive behavior, and generalized anxiety disorder. Women are more at risk than men.

Assessing your own anxiety levels

If you suffer from anxiety that’s making your life miserable I suggest you see a specialist who can assess your anxiety level by using some tools and questionnaires. You can contact a psychotherapist who will work with you on cognitive behavioral therapy, biofeedback or guided imagery. You can also discuss medication management.

Do your homework before seeking professional help. Research “anxiety," ask those you trust for recommendations or contact an MS organization or your neurologist. Take a deep breath, think of something that puts a smile on your face and know that you are never alone.

NOTE: Janssen Global Services, LLC, paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.