She's a character, she has opinions.

How The Chronically Ill Form Relationships Online

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This post really struck a chord with me. I’ve met some wonderful chronically-ill people online, some who have the same illnesses I do, some who don’t. But all have a similar understanding of what it is to be chronically ill and I can’t stress how wonderful and valuable that is.

We want to find others with the same symptoms or diagnosis as ourselves, and upon making this connection we immediately begin spouting off our personal stories, complete with symptom progressions, medications, prognosis, and views on the future.

…It means information may be available about how to cope with many of the problems I face, and that it’s been around long enough for there to be data for use in framing a prognosis. … I am guaranteed to find people I can talk to who I know will understand what I mean when I try to describe weird symptoms or processes I go through, and if they understand that must mean I belong. [Read more.]

It’s lonely being chronically ill. In my case it’s especially lonely because I have invisible illnesses. To look at me you’d think I was well. It’s hard to get people to understand what’s going on with me, maybe especially because they can’t see the nerve pain zinging along my arm or the fatigue pressing down on me.

I’ve mentioned before that it’s rare for someone my age to get Post-Herpetic Neuralgia. When you experience an illness that is generally not exerpienced by your age group you can feel abandoned. But you can also post about it on the internet and meet someone your own age with your own illness and the two of you can bond over something that next to no one else in your lives can understand. And that’s valuable.

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Written by tldegray

September 18, 2010 at 4:00 pm

One Response

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  1. HiI developed PHN when I was 27 and have had it for 9 years. It affects the right side of my back from shoulder blade to waist, spanning round my side to under my ribcage, it hurts to breathe, sit, stand, walk… As you well know, it’s a nightmare. I contacted the local support group and was told to just get over it because I was ‘young’, when diagnosed with shingles, I wasn’t given anti-virals because of my age and for many years I lived under the expectation that I’d get better in 6 months to a year. My employers let me go after 6 months, but only after calling me up demanding ‘why aren’t you better yet’ – delightful people.Throughout this time it has been revealed that my nerves get damaged easily and I have a sensitive immune system. Neurontin cuts out some of the pain, but every day is a struggle. I heavily rely on my family and cat, but friends have slowly ebbed away over the years – my reality seemed to be too much for them to deal with.Like you, I find myself frustrated that having PHN young, means that I am alienated from other sufferers. In the beginning I was put on a support phone ring, but just got people who were 70+ who’d shout and get angry at me saying how their lives had changed. I understood their anger and need to vent, but I couldn’t help but feel… what about me… at least you had time to have a job, a husband, a house, a child, a family. Of course I said nothing and got myself taken off of the list asap ;)It is a truly cruel condition. I have tried every treatment suggested and opened myself up to alternative therapies, but none have worked. After a monumental break down last year I found a counsellor who after hearing my story said”You don’t sound depressed, you sound like you are at the end of your tether and pissed off with your situation and I don’t blame you!” Which is 100 times better than taking anti-depressants that the doctor had suggested. Since then I am slowly coming to terms with having this constant pain forever, and maybe one day when I say that I won’t have that sinking feeling when I say that.Please feel free to contact me, we need to stick together :)Fingers crossed that today is a good one LoveNicola

    Nicola

    October 11, 2011 at 1:58 pm


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