So Alone...Feelings of Isolation

Hello, my name is Charles, and I am a freak. Not really, but often that is how it felt when telling my story to others - the story of a young man trapped in an 80-year-old body...and now, on top of everything else, Parkinson's was added to this freak show. 😜

How many people do you know with 3 hip replacements (by age 39) - I knew none. How many people had undergone massive stomach surgery at the age of 17 – I knew none. How many people were diagnosed with arthritis at 15 – I knew no one. This list could go on and on. In so many ways, I was different. I was not a typical “guy”, and often I could not do the things that a guy, or a young man, or a husband, or a father, could do.

Don’t get me wrong, there is nothing wrong with differences, and in many ways, differences are good and give us strength. But there’s a flipside to this. Differences can also be very isolating. When we are different, we can feel very alone. We can feel very out of place.

Often, when those differences take the form of challenges or difficulties, or in my case health issues, that loneliness is even greater. You can be surrounded by people who love you, care for you, and are great friends and family, and still be alone. You feel that nobody understands the path you’re walking. You look around and you see nobody like you. People see you, and they’re sympathetic, but they truly have no idea what you’re walking through - at least, that’s how it feels.

When I was diagnosed with arthritis at 15, there were no other 15-year-olds in my boat. I received a lot of love and support and care, but I could not find anybody like me. Recently, I went to a support group for arthritis. I was 43 years old, and by far the youngest person there (by 20+ years) – it was isolating. When I got my diagnosis of Parkinson’s, the only people I knew who had Parkinson’s were 20 and 30 years older than me. In fact, I discovered, that only a small fraction of Parkinson’s patients fall into my category of early onset – and aside from Michael J. Fox, I knew of no one.

It is easy, in these times of loneliness, to lose perspective. Often, I would withdraw into myself, and I would isolate myself even further, because no one got it, no one understood (at least that is what I told myself). The further I isolated myself, the more alone I felt – and the cycle kept going and going.

Loneliness can be a battle we all face. It is brought on by many things, not just health issues. It can be brought on by life events. It can be brought on by loss. It can be brought on by differences in how we were created, but whatever the cause, loneliness can be a very hard place to be in. It can be discouraging. It can skew our perspective. It can make us think things are worse than they really are. It can make you sad and angry and frustrated, all of which isolate us even further, and cause us to hold people at arm’s length.

When I have gotten in these places, sometimes I could get out of them and sometimes I couldn’t. Ultimately to get out of them, I had to change my perspective, and realize yes I was different, yes others do not know what I’m going through personally, and yes I may be the only one in this situation. Just because all of these may be true, it does not mean that I’m alone. It may mean I’m different, it may mean life is harder, but it does not mean I’m walking through this by myself.

My wife and children do not have to have Parkinson’s to know that it’s hard, and to know that I’m struggling. Just like I don’t have to be shot to know that it hurts. Those around me do not have to experience my difficulties to know that it hurts. Sometimes we shortchange those around us by thinking they have to go through what we go through, to love, to care, and to support us.

Sometimes just this simple realization can get us out of the pit. Sometimes we may need medication, or to talk with a professional, but whatever the course, we can get out of this spiral downward, by remembering all of those around us that love us, and by remembering that we have a God who will never leave us or forsake us. “Even though I walk through the valley of shadow of death, I will fear no evil, for YOU are with me…” (Psalm 23:4). Even if all others forsake me, He is always with me.

Sometimes, we might just need to look harder for others who are walking the same path as us. While it is great to have others around me, there is something to be said for finding those ones who are going through the same things, and really do "get it". For me, that has taken the shape of friends and community online. I know of no one in my area, that is my age, and that is dealing with the struggles I am facing. But online, I have found people, in many ways, just like me, who truly "get" where I am, what I am feeling, and the struggles I am facing. In these groups, I find strength, comfort, encouragement, community, and many times belonging - something we all need. 

Loneliness is sometimes a choice and a perspective that we may have due to the hurt, difficulties, or differences we are facing. Remember you have a God who loves you and is always with you, and people around you who love and care for you, and somewhere, you also have someone walking the same path you are, you just may have to look a little harder to find them. Don't isolate yourself and believe the lie that you are alone. We are never truly alone. Don't isolate yourself - find that community to walk this path with you. Remember, He is always with you, and He will never leave you, and because of this, you are never truly alone.