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The Loneliness and Isolation That Have Set in Since My Chronic Illness Diagnosis

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Disease can be uncomfortable for people to live with or be around. It can also create isolation and loneliness in the chronically ill that we sometimes have no control or say over.

Many times they don’t know how to help us, and some are just rude – they don’t want to hear us “whine.” We cannot control how people react to our illness.

Chronic illness can create a certain kind of loneliness for those who go through it. You don’t really understand it until you yourself experience it on a firsthand basis.

Chronic illness can create isolation. From society, from friends, from family, from my child and from myself.

It seems ever since my arthritis really set in, the schedules of everyone I know suddenly became full for years in advance. I stopped going out as it proved too difficult for me on my own and I gave up nights of drinking at a party or concert. I can’t keep up with hikes, I can’t afford the cover, I can’t dance the night away, I can’t handle a crowd anymore. I can barely handle transporting there and back after whatever event. I need a ride. It wasn’t always like this. I remember just a few short years ago when all of this was possible.

Often when I meet someone new I find a way to inform them of my illness as soon as I can. I don’t like faking OK to make someone else comfortable; I’m uncomfortable enough living with rheumatoid arthritis, osteoarthritis and fibromyalgia, plus all it comes with. I judge whether I want someone in my life based off two things: how they treat my kid and how they react to my illness. Do they still treat me like a human or do they look at me with pity? Some just don’t respond at all. Some even tell me that everyone deals with chronic pain… When you become chronically ill, you seem to become chronically susceptible to bullshit comments and actions.

Over the past three years and a bit I’ve watched the isolation and loneliness that manifests with chronic illness take its part in my life.

I used to have no problems creating new friends because of my involvement in various underground music scenes. I used to be very social – now social anxiety overrules my fun and my mind. I’ve found that people typically don’t want to be friends with those with disabilities, and few go out of their way to do so. I often hide rather than feel like a burden.

I rarely make plans; would I be able to do them or enjoy them without pain and fatigue nagging away at me? Making plans with chronic illness is difficult. I can barely keep up with my hectic life because of how much chronic illness entails, looking after myself then trying to catch up on everything.

I am not flaky, my chronic illness is, and I have more than one.

There are no (or few) family dinners, anniversaries, weddings, holidays for me to attend. Most are spent with my child while I painfully power through them or have to manipulate in ways that best suit how my health is acting. Holidays during the winter prove difficult as my health always wants to act up during the colder months. I can barely lift a turkey out of the oven on my own.

My father moved away to China years ago with plans to move to Thailand. I see him about once a year if lucky. I question if my body could handle the long flight to visit him when his beach-front retirement property is finished. My nearly 70-year-old father can handle more traveling than I at 32.

My mother and I haven’t spoken in some time; her words tend to sting rather than comfort or add support. I see an odd Instagram or Facebook like from a cousin or two here and there. Most people contact me when they want something.

Is the problem with me, or the way we treat those with disabilities as an “inconvenience?” I wonder if my health makes me the black sheep of the family. When I became ill, I had to look back at the patterns of support people gave me before my diagnosis to understand why they were never there for me after.

One of the biggest lessons in life chronic illness taught me is what real support is. Those you expect it from may not be the ones who give it to you. When I became sick with an invisible illness, I became invisible to some who knew me since birth, or the planning of my birth.

When my grandmother passed away, slowly my view of family started to diminish as mine crumbled over the years. I remember similar comments towards my grandmother’s weight and the nagging of her pain when she stayed with us during her double knee replacements. I was too young, a distracted teenage girl with music and boys popping into my life – what the hell did I know about chronic illness? But 16 years later I know all too well. Those memories of her crying out in agony during the middle of the night now haunt me, most certainly when my own knee pain keeps me awake or from going out. She was in her late 70s, I am in my early 30s.

I saw some of them treat my chronically ill aunt similarly, the same ones whom I am invisible to today. They shamed her for her laziness and whining about pain. I guess for some families, if the blood isn’t perfect, it’s not that thick. Having disease is shameful in some eyes; for others it adds insight and wisdom.

Like with my chronic illness diagnosis, acceptance is key. While the emotions of loneliness creep into my life, both expected and unexpected, I have to remind myself this is part of life and part of what happens with chronic illness for many. I am not as alone as I feel. I must recognize that my illness will make me feel even more alone than I am in reality. I can also control some of my loneliness by knowing some of the best friends to make are others who are chronically ill. There are always new chapters in life.

Photo by Alex Ivashenko on Unsplash

Originally published: September 7, 2018
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