This Is How I Would Describe Loneliness With Myasthenia Gravis

I was told about the symptoms of myasthenia gravis (MG). I was even told you about the possible side effects of the treatments I was put on (like prednisone and weight gain). But no one told me that I’d get a dose of chronic illness loneliness.

If you have a chronic illness, the fact that it can lead to loneliness shouldn’t be surprising. We’ve all had to leave a party early, bail on dinner last minute or skip a girls night out because a flare-up was on the horizon. Us spoonies know with diagnosis comes a deep sense of isolation. Our lives take a major detour. It’s like entering the twilight zone: you can see your old life happening around you, but it’s like you’re on your own little island. There’s a wall up or something. You feel detached from the life you used to live, from your old self and your old friends and family. It’s as if you’ve entered a different realm, a strange, uncharted land that sets us apart.  Yes — chronic illness loneliness is real.

Leave Me Alone

Let’s be clear: there is a difference between being alone and being lonely. I grew up as an only child, so I am no stranger to being alone. I love my own company. Some, like my mom, may argue a bit too much. I never really felt alone or lonely, until I was diagnosed with MG. It was a natural reaction for me to retreat inward to cope with everything that was going on. But this time I truly felt alone because I didn’t know who I was anymore — I felt like I was spending time with a stranger. And truth be told, chronic illness loneliness is a different type of lonely.

You may say, “Well, that’s your choice for isolating yourself.” Yes, and no. Let me explain.

A chronic illness diagnosis is a very confusing and stressful time. Everyone responds to it a little differently. You may not understand what exactly is going on with your body and what it really means for the rest of your life. Some people get angry or go numb. Some rely heavily on their friends and families for support, and some withdraw even if there are people present to support them. It’s a toss up. I clearly was the latter.

Reasons for Isolation

It wasn’t a conscious decision to add chronic illness loneliness to my life. From the moment of my diagnosis, I harbored resentment toward my body for not cooperating with the life I wanted to live. I wanted to still be out living my best life; not in the my den, struggling to make it to my bed. I wanted to take trips to all the places I haven’t been, not trips to the various ERs in my area and being admitted for long stays.

In all honestly, I was ashamed of my illness and was hiding from the world. On the rare occasions I did go out, it wasn’t an enjoyable experience. “What’s the point?” was pretty much my thought. I could stay home and be labeled as a flaky friend, or force myself to go out and suffer the consequences of being too active instead of resting. I was embarrassed by the physical side effects of my illness (prednisone weight gain and acne).

The anxiety of not knowing when a symptom would flare was also enough to keep me inside. I didn’t want to have to explain to people why my eye is drooping or why my speech is slurred. So I decided it would be best to stay home. I built a comfort bubble of isolation. My safe place, where the only person subjected to my illness was me.

What About Your Friends?

I have a few friends who will check in on me from time to time. I had friends who would constantly invite me out places to have some fun. One of whom I’m no longer really friends with. She didn’t understand my new reality. She wanted pre-MG Morg. The one who was always down for impulsive trips to the beach or unlimited mimosa brunches followed by day party turn up. She consistently made me feel bad when I said I didn’t feel up to it. I was “lame” to her.

On the other hand, I had one friend always invite me places but made sure to do health checks and remind me to not overdo it. She still does it to this very day.

Disconnected From Others

I can’t lie and say I didn’t have major moments of FOMO while scrolling social media and seeing everyone do amazing things. The greatest accomplishment of my day would be making it to my bedroom. At the time, I felt like I made the best choice for myself and that’s all I could really do. However, I can say I wish my friends and family made more of an effort to be present, to check in on me or to just come over and watch TV in silence. Laughter is good for the soul and I needed positive vibes and good times — not alone time to sit and dwell on everything that’s happening.

Now that I’m “doing the work” as Iyanla Vanzant would say, I’m pulling myself out of the hole. I realize that life went on without me and I don’t feel connected to my friends anymore. Scheduling time to get together seems to be more difficult than solving a Rubik’s cube.  We live completely different lives now. And while I can empathize with the perils of motherhood and they can ask me questions about my illness, it’s not evenly yolked. Some things can’t really be adequately expressed. Spoonie life is something you don’t understand unless you’re the spoon.

I don’t think my friends mean to separate themselves from me. I honestly believe this is uncharted territory. Most of the time, people don’t know what to say when someone is facing a hardship. They probably want to support and aren’t sure how. I feel as though I put forth effort into maintaining my relationships, but it’s difficult waters to navigate. Maybe too much time passed when I was in my hole.

No New Friends

I’ve tried to open up about these feelings to my friends and family over the years about how I miss them and I feel disconnected. Not in a whiny way; just in a “hey, I miss you/us way.” Not much has changed, though. Yes, they will tell me I’m being a bit irrational and may make a short-lived effort to be more inclusive. Relief was short-lived. Each missed outing, each milestone birthday or celebration, every new medication or a trip to the ER just widens the gap between the old me and the new me, and subsequently, between me and my friends/family.

When I felt myself being detached from my old loves ones, I looked for new communities to join. So I went on a search for support groups in my area of those with the same illness as me. While they offered some relief because they they were ill too, I found that the age gap was too wide. They could relate to being ill, but they couldn’t relate to lifestyle struggles of being young-ish and ill. So it didn’t do much in terms of filling that social interaction void from my friends, but being around others with the same illness helped me feel a little less alone.

My search then turned electronic. I went to the internet searching for blogs, MG pages, FB groups and anything that could foster that sense of belonging, acceptance and community that I was craving. I joined and followed as many as I could, but I haven’t found many blogs for myasthenia gravis (which is part of the reason why I started one).

Coping with Chronic Illness Loneliness

Interestingly enough, my chronic illness journey has catapulted my holistic wellness journey. I don’t remember the exact day I made the mindset shift, but I can say it was possibly the best part of being diagnosed. I’ve spoken in depth about meditation and gratitude. When I get frustrated, or things are just going haywire, I’m able to recenter myself from going down the pit of despair by taking a few deep breaths and thinking of all the things I have to be grateful for. Sometimes it’s as simple as “I woke up today.”

By choosing gratitude, I’m accepting what is, releasing what was and embracing what will be. I have faith that even though things aren’t picture perfect, everything works together for a purpose greater than my understanding. You can’t change your illness (trust me, I’ve tried) or how people treat you. You can change your mindset. As always, perspective is key.

So while I have no cure for chronic illness loneliness just like I don’t have a cure for my chronic illness, I can say that it does get better with time, and with honest communication. You’ve got to be honest with yourself and take some responsibly if you isolated yourself from people. I definitely suggest letting your friends know that you are in need a little TLC, then allow the situations to play out as they’re supposed to. Release expectations that people owe you anything, including their time and support. Accept the reality and navigate your relationships to the best of your ability.

Follow this journey on Is Was Will Be.