The Cure I Found for Feeling Alone in My Fight Against MS

I have always been a fairly anxious individual and have sought happiness from diet, exercise and medication. When I was originally diagnosed with multiple sclerosis (MS), I never felt more alone.

It’s so easy to feel all alone in this big world when you are confined to the four walls of your bedroom on rest. I had lost my vision in both eyes due to an extreme case of optic neuritis, which caused me to lose my ability to drive, work and essentially socialize from the hole of depression I fell into.

 

Unfortunately, the MS continued to worsen with other debilitating symptoms such as chronic fatigue to the point where I could barely get out of bed to go to the bathroom, leg and foot numbness, extreme vertigo and even incontinence, among dozens of others. I did what I had to do to get by and provide for my family, while staying distracted enough to forget about my health and depression until I realized that feeling all alone is no way to live. I didn’t want to go to bed at night, listening to the silence and stillness of the house and feeling so sad and empty inside. Here’s what I did to fight my loneliness and depression, find support and manage stress.

The medical bills continued to waltz into the mailbox and I found myself thinking more frequently how little of a fight I had left in me to “deal” with this bulls*** chronic illness. I thought, “Is the fight really worth putting my family into debt?” and even “My son will be better off without me digging us into this hole of medical bills – without me he could probably go to college.” It simply didn’t seem fair. Not fair to my husband that I was always drained and down. Not fair to my son that I felt so selfish about using money that I contemplated leaving them all. Enough was enough. I didn’t want to be sad.

What does a 20-something do when she feels all alone? Call Mom.

I will be the first to admit that I am extremely fortunate to have a mom and dad that are around and love me dearly. I called my mom, who I think is more torn up about my illness than I am – both my mom and dad hate seeing me like this. Mom told me to go to bed and rest. Rest for as long as possible until I couldn’t rest anymore and to tell my husband that I needed the rest. I told my dear husband who took care of our dogs and our son, and I slept for two days.

When I woke up, I still felt drained, but I felt better – as if I had a little more clarity into what I needed to do. I wanted to feel less alone in this world and so I decided to join a few support groups. The one that has been extremely eye-opening for me is a Facebook MS group for women only. It’s amazing seeing these fighters share their stories from all over the world. The only other MS warriors I know personally are twice my age and in a completely different chapter of life, but this group introduced me to young mothers fighting the same (and similar) debilitating conditions.

These groups have been a saving grace. With new symptoms, I can share my experience from my hospital bed and ask if I’m just imagining it, if it’s MS or if it is something completely different. My fellow fighters have been so helpful and supportive that I gradually started to feel my strength return.

As soon as I got back on my feet, I opened up more with my parents – who have researched everything from stem-cell therapy to various MS diets to help me out. I tell them when I’m not well and they understand. They understand because they took hours, days and weeks to research MS, listen to stories and read books on the illness and what fighters across the planet are feeling and doing to get better.

Knowing they cared enough to understand made me feel much less alone.

When I was so worn down that I could hardly stand, let alone think of words to string together in a sentence, I felt like everyone was judging. I felt like people looked at me like I was a lazy woman with a pocket filled with excuses. My parents and fellow fighters have taught me that I’m not “lazy” and these aren’t “excuses.” We are a badass group of people fighting to survive. Not just “survive” – we are fighting for happiness and independence, joy and friendships.

The cure for loneliness? Rest and communication. Don’t feel alone, because this world is massive. There are many wonderful and insightful people outside of your family and friends that can shed light on the battle you are fighting, to give you just a little more strength. Don’t let your assumptions about those around you who could be judging your actions dictate your mood or your strength. You are more than your illness and you are not alone.

If you feel alone, please reach out to me. I care and I want to understand your story.

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Thinkstock photo via KatBuslaeva.