"Where there is creativity, there is hope." ~ Donna Karan

Monday, September 10, 2012

Finding hope in the loneliness

Living with chronic illness and pain can be overwhelmingly lonely, especially when the symptoms are hidden from sight. This often makes it harder to get the support that is needed, because our needs aren't as apparent as someone who has a visible disability. The isolation that is caused by an invisible illness, can be incredibly painful.
Feelings of abandonment and rejection can convince you that there is no one who can remotely understand, and when you feel lonely, you feel hopeless. I know first hand the reality of this loneliness. I find the loneliness the most challenging aspect of living with an invisible illness. It's not just the loss of physical health, and healthy people can't really comprehend how much we are separated.
When I was first diagnosed with a plethora of problems, I just expected that people would be there for me, and they were for a little while. There was a time when I did feel supported and encouraged, but as time went on, the support dwindled, and so did my hope. The phone calls and text messages slowly stopped. Prayers subsided and friendships became distant memories.
For the first time in my life I felt like I could no longer swim, and that I was just left right where I was to drown. People soon forgot that I was even sick, and failed to be supportive. My diagnosis had become old news.
These days it's still a struggle to keep my head above water at times. People don't realise that I need more support now than I did when I was first diagnosed. Some people even assume that I am showered with support from friends and family regularly, when that's not always the case.
I feel lonely very often. I used to be able to talk about how I was feeling with my family, receive a hug and some encouraging words, and feel a little better. It's different now. Everyone is just over it, and understandably so. My illness is so year two thousand and seven. Now, when I'm having a really rough day and just want a listening ear and a shoulder to cry on, it's not always there.
The topic gets changed when I do try to talk about things. It's all you're an adult, suck it up princess, deal with it and move on. Which is probably because I just end up exploding, when I do explain and someone doesn't understand how I'm feeling and fails to see why it is I feel that way. I do take things out on others due to the frustration of being couped up inside all day by myself.
To be fair, a lot of crap stuff has happened over the years, and everyone already has a lot to deal with as it is. So when I'm having a bad coping day, it's not always okay. I know that my family tries their best, it's just frustratingly hard for them to understand.
I think what makes things much more harder is the fact that I don't have close friendships to fall back on, so I'm left feeling let down and lonely. There aren't many people outside of my family who I feel I can talk to and be totally honest about how I really am, so the feelings and the loneliness just get pushed and stuffed down deeper and deeper inside, and the hole of hopelessness grows wider, and darker.
At times I get panicky when I am most distraught when I feel I have no where to turn. There are days I have found myself wishing that I had a friend who I could call on a bad day, who really understands what I'm going through, and be able to talk about how I am feeling and ask them to pray for me.
I do have a few friends, and it's great when we do hang out. I do try to attend young adults group at church when I feel able too, but that doesn't mean that I don't still come home feeling just as lonely as ever. I can be surrounded by people, and still feel suffocated by sadness. I feel left out, left behind and isolated by my infirmities. It's nobody's fault, it's just hard to see that I'm struggling when it looks like I am doing so well. Comments like "but, you look so well", only contribute to the loneliness.
The friends that I do have left are school friends, and most of them are busy with their lives, and have moved on. They've gone on and expanded their friendship circles - they have uni friends and work friends, and sometimes I feel like I'm no longer needed, and that I'm no longer important.
Sure, I talk to people I meet at parties and church gatherings, but I fail to form friendships because I am unable to make a regular appearance. And because I don't have those relationships that I need, I don't feel like I can let people in and tell them when I'm struggling the most.
To be truthful, I am a terrible friend. It's my fault that I feel friendless sometimes. My energy to maintain friendships is impacted and significantly limited, and I've withdrawn and put up walls. I find it hard to connect with others as I feel that I don't have much in common with them now. Neither do I want to bore what friends I do have with my burdens. Chronic illness has caused me to lose my confidence a little, too. Being sick for so long has changed me. I am a different person than the one I was six years ago, my life has drastically changed. I'm not always fun to hang out with.
Sometimes I can go up to six months without any social interaction - no phone calls or messages, nothing. Not even a quick hello, I'm busy, but I've been thinking of you. And when I do feel up to doing something, people are either busy, or they don't want to do anything. Half the problem is that people don't know what to do or say, and they think that there is nothing they can do, so they fail to be there at all. People probably assume that I would rather be left alone, too.
When solitude is forced upon you, and there isn't much that you can do about it, it's quite easy to become inward turn. I spend most days at home, and if I do go out for an hour, it's very rarely with someone else. I have a lot of time to stew over and think about my loneliness, and this just makes it worse.
But I have found incredible hope in my loneliness.
I took a counsellors advice, and took the plunge - I reached out to and connected with people who have travelled similar paths. I created a new circle of friends online, through this blog and social media. At first I was skeptical, and very wary. I naively thought that the internet and support forums were just full of trolls, spammers, debbie downers and psychos. There are some, but the wonderful people far out number them. There is sense of comradery that only those with a chronic illness can give.
These people are the most supportive, encouraging, uplifting, inspiring, incredible and funny people I know. There is just something magical about online friendships. These friends have given me hope when I thought there wasn't any. It's comforting to know that there is someone who you've never met halfway around the world praying for you. There are support forums, full of people wanting to provide advice and a listening ear.
There are bloggers who have also given me so much hope. Their honest words have given me peace and they have shone light in the pitch darkness. I have found people that I can relate to. Chronic pain and illness is like an entire different language, and I've found people who speak it and truly understand my struggles and frustrations. They validate my feelings. These people are there for me, they share my happiness on good days, and they make the bad days more bearable.
Reading blogs, and writing my own has been my lifeline. I am now more hopeful, because I know that I'm not alone, and that there are people out there who share my feelings. I now have a support network at my finger tips. Online friendships and blogs don't fill the void of loneliness entirely, but they sure do help. When I am feeling down, or am having a bad pain day, I can log on and read something encouraging that helps, and log off feeling a little more hopeful.
This week is National Invisible Chronic Illness Awareness week. It's a great week to get involved in and help give people hope. Hearing "Hey, I feel the exact same way, you're not alone, I understand, and I am hear for you" or "I haven't been able to find the words, but you've just expressed how I've been feeling, and now I'm feeling less alone"; is indescribably comforting.
Loneliness can consume you if you let it, but you can find hope like I did. No matter how dark it gets, you are never alone and there is always hope.

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Anonymous said...

I could have written these exact words! (Except for the part on the internet networking. I haven't explored that area as of yet)
I have been sick as far back as I can remember but not til 2006 did my world come to a complete stop! I am going to print this out and take it to my therapist. She doesn't seem to fully understand just how hard it is to form friendships when you don't have energy but you have said it very well in this piece. Thank you so much for sharing your world & thoughts :)

piffle said...

great post emily, look back at your achievements and trust people will find you in the end- look back at the email i sent you feb the 4th, im not sure you ever read it and you did not answer me back. but its got al your good stuff in it!!

Talitha Kalago said...

My offer still stands. My msn is:

traditional_evoltuion at hotmail.com

My skype is:


I'm usually around during daylight hours.

Aviva said...

Wow, it's like you got inside my head and heart and poured it all out in this blog post!

My experience has been almost identical to yours, other than that I'm older, married and have a child. For a while, maybe six months, my mommy friends who I'd previously seen at least three times a week, called, emailed and wanted to help me out by bringing food, taking my daughter on playdates, etc. But (temporarily) healthy people don't understand illnesses that don't have an end date and that you don't, at some point, get better from.

I too discovered the blogosphere and found my community and, like you say, while it doesn't entirely eradicate all the loneliness, it's a huge, literally life-saving, help.

Meanwhile, I'm so happy I came across your blog not long ago. :)

loopysos said...

Great blog post, I couldn't of put it better myself, and totally 100% relate to it. I also blog as well, hopefully you check it out. And so glad came across this blog :) xx

Johnny Oneal said...

I could somehow relate to that. Not in a way that I have a chronic disease and that I felt left out. But in terms of reconnecting to friends whom I haven't seen for a while.

Tamara Epps said...

Reading this has reminded me how lucky I am to have formed friendships that (so far) haven't eroded - of course this may change as I am now a lot worse than I was when those friendships started. The worst part of it for me is knowing that I can never guarantee that I'll be there for events such as birthdays. At school I had the same problem until my friends just stopped inviting me and I am terrified that that will happen again.

Wishing you the best,
Tamara x

Miss Chronically Creative said...

@ anonymous: you should give social media a go. Especially twitter. I highly recommend it. Can you not try another therapist? That's terrible that they don't have a good understanding - they should, it's there job. My fatigue specialist does have an understanding of this apspect, thankfully! Thank you for your lovely comment.

@ piffle: thank you! My apologies, I don't recall getting that email. Must of got lost in all the spam! I did receive your last email though, and I have replied, did you get it? I swear my reply button is faulty sometimes.

@Talitha: I will take you up on that offer. Thank you hun. Speak soon.

@ Aviva: It's nice to know people can identify, and I am so glad that you have found some support in the blogging community. I just started following your blog, I am looking forward to getting to know you.

@ loopysos: thank you so much! I will definitely be by to check it out.

@ Johnny: Thank you so much for your comment. It's good to know that anyone can relate to this on some level.

@ Tamara: yeah, I hate that part too. I always feel really guilty when I have to say no. I have a friends wedding coming up. It's a fair way to travel, so I don't know if I'll manage to make it. It sucks, big time. I am not invited to a lot of things anymore, either people assume I'll turn it down, or they are tired of me saying no -it's nice to still get an invite though and feel like you are important in that friendship circle. You really do know who your friends are when illness strikes. I am glad to hear that you do have some friends, I am always here for you too babe.

Shannon Hutcheson said...

I'm so glad you made a post to point out/share all your best/most popular/fav posts of the year! I'm sure to comment on several.

This one really speaks to me. Feeling lonely is a constant in my life as well. Especially since my mom (who was my best friend) passed in 2008. I have been sick so long it seems none of my friends have had time for me just as long. I've lived in Toronto nearly 12 years now, and haven't made a single new friend that I see on a regular basis. Or at least outside of Facebook lol.

Being sick, homebound, pretty much ensures that your only friends will be online. Something I am SO very grateful for. If it were not for connecting with other folks who suffer as I do, who truly understand (just like you), I'd have long since gone straight to the loonie bin, or worse.

So keep on blogging my dear. I don't use Twitter nearly as much as I used to and kick myself but I'm gonna try harder in the new year to reconnect with my social media friends.

Sending much love and light to you all. <3

Miss Chronically Creative said...

Hey Shannon! I was just going back through some published comments and realised that I totally missed your comment. I am terribly sorry. I am so glad that you found this post comforting in some way. I am truly sorry to hear about your mother. I recently lost my grandmother and can relate to how you must be feeling a little bit. Grief and chronic illness is a brutal combination.

My Nan was my go to person- she was always available during the week for me to pop in and visit. Enjoying tea and biscuits with her always made a bad day a little better. She was always interested in seeing what crafts I had made, what colour nail polish I had on, and what new clothes I bought at the shops.

All that I have left are the people on social media. They keep me going and keep me sane. I'm happy that you have found support online so helpful too.

Feel free to email me if you ever nedd a chat. Love right back at ya.



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