MS: Many Stories – Caring For My Mental Health

Recently, Brett has begun interacting with the Multiple Sclerosis thread on Reddit.  During one of these discussions, he started having a conversation with a father about his daughter’s MS journey and, in particular, the mental health aspect of it.  Considering how important this topic is, Brett asked both the father and his daughter (Allison) whether they would be willing to share their experiences with MStranslate.  Allison agreed and her story is shown below.

We are deeply grateful to Allison for sharing such personal insights into an often overlooked topic.

I was diagnosed with MS when I was 19, breaking my vow to ever go back to a doctor ever again. 

I have been chronically ill since I was about 8 years old, diagnosed with Juvenile Idiopathic Arthritis at 12, and then at 14 with Fibromyalgia. I had seen more doctors than I ever cared to see and I was done with all of it; drug side-effects, needles, treatments, waiting rooms, hospitals, blood work, MRIs, ultrasounds, x-Rays– you name it, I did it.

I was done with all the doctors who didn’t know what I had, the ones who didn’t believe I had anything, and the ones who thought I was crazy.

I wasn’t going back.

But then I woke up one morning to discover I had lost vision in my left eye and I had to go back, and within months, I had a new diagnosis: Multiple Sclerosis.

I would have thought that by then, I would’ve been a pro at getting serious medical diagnoses, but I wasn’t.  My world went darker than it ever had before, and I gave up my hopes and dreams– I gave up my future.

My parents and my neurologist who is specialized in MS, began pressing me to see a psychiatrist. My neurologist referred me to one who had experience with working with people with MS. She gave me her number and some information about her and left it with me.

I didn’t want to see a psychiatrist.  But I made an appointment anyway.

When the appointment came, I still wasn’t crazy about the idea of seeing a psychiatrist. I didn’t think I needed one.

I sat down in her office and she wanted me to tell her my life story, so I did.

She listened to every word, taking notes as she did so.

Few people want to hear your life story, and no one takes notes, but she did, and I felt heard, cared for, and understood.

I was on treatment, trying to eat healthy, drinking lots of water, and trying to do some sort of exercise every day to care for my body which was fighting MS. But I hadn’t been taking care of my mind, or my heart, which was all just as equally affected by MS.

She explained to me that I have lesions on parts of my brain which physically make it harder for me to control my emotions. She told me ways I can take care of my mental health and she told me the signs and warnings I should pay attention to so that I know when I need her help in taking care of my mental health. I need her just as much as I need my neurologist.

I walked out of her office feeling like I had made a friend.  Not only did I feel lighter, I felt encouraged that I was doing good, and now I knew who to call when things were too hard, when I wasn’t doing good, and when things felt too heavy.

I have a psychiatrist appointment next week because just like I can’t stop taking care of the physical side of MS, I can’t stop taking care of the mental side of it either.