As time goes on, you begin to forge close relationships with people from all over the world who have the same illness as you. These people may be far away, yet nonetheless you share a closer bond with them than people you have known your entire life who live close by. You lean on each other. And while you might miss your old friends, the amount to which you yearn for the rekindling of your relationship is likely fantasized and amplified in your head.
The truth is, when it really comes down to it, and worse comes to worse, whose voice would you rather hear on the other end of the phone? The person you grew up with who lives nearby but leads an entirely different lifestyle than your own, or the person you only recently met online who lives on a different continent but has a deeper understanding of what you are going through based on personal experience? I think most would claim the latter in a heartbeat, which says a lot and begs me to ask the question: even if your old friends had continued visiting or calling, would you not have eventually been the one who stopped reaching out to them? …or, perhaps, in a way you were and you do not even realize it.
In many cases, I believe so. Not because we are rude and most likely not because we do not like our old friends, but because they can never possibly come close to understanding us the way our friends from all over the world whom we met in online support groups can. Just the same, is it then possible our old friends didn’t betray us or leave us, but rather that we simply no longer have much in common with one another?
Perhaps this is the case, the truth at the core of it all, because there is no doubt that illness and solitude forever change us. We will never be the same, we will never be the people they initially bonded with. They were friends with the old versions of us, not our illness induced reincarnations. They made friends with who we once were, not with who we are now. Likewise, who we once were held a much stronger bond with them than who we are today does. After all, the changes we undergo are in no way similar to the life changes experienced by the average individual. Ours are rapid and severe, their impacts permanently branding our souls and hearts with igneous iron that entirely changes who we are and endows us with a new set of eyes void of the veil hanging in front of our previous ones.
But wait, there’s another side to the story here in my case, and I venture to reckon in many others as well:
When I was bed bound, I was so bitter that my lifelong best friends never called or visited. I could not stand to get on social media and see pictures of them going on with their normal lives –you know, the ones which looked very much like my old life, as well as the life I felt I should presently be living? I am not sure why, but it took a very long time before the day came when I was beating myself up and thinking things like “they haven’t even called me in years, they’ve never tried to visit me…”, and halfway through my usual train of “poor me, no one likes me” thoughts, I was interrupted by a sudden realization.
Had I called them in years? Had I tried to visit them, or if unable to, had I invited them over? No, No, and NO. So maybe, it was just as much my fault as it was theirs …no, it definitely was. They had no experience with chronic illness, and likely felt scared or awkward reaching out due to how ignorant (not in a bad way) they were on the subject.
Then again, if that were the case, wouldn’t GOOD friends reach out anyway? And learn as much as they could? “Yeah, of course they would,” I thought to myself, growing madder as the epiphany that originally began to cultivate a light of understanding and the ability to look at things from their perspective quickly begun transforming from a beacon of hope and growth into a dark hole of victim mentality and loathing.
Then came another window of insight: yes, they could have reached out anyway, despite our lifestyles being entirely different and them feeling awkward or scared …but wasn’t it true that the very reason I didn’t reach out to them either was because they didn’t know what it was like to be in my situation? Wasn’t it true that they were right? That the very reason they didn’t reach out to me was the same reason they were never the first people I dialed when in my darkest places?
Then, I began to wonder the inevitable: was I in the wrong? Did they feel as betrayed by me as I had felt by them? Eventually, I came to terms with the fact that perhaps no one was in the wrong, despite so desperately wanting to blame someone or something for the shittiness of all. In the end, I came to terms with the fact that it was just life. We were all just doing the best we knew how with the cards we were dealt, even if our best wasn’t another person’s version of perfection.
Having no one to blame anymore, I was able to forgive them. And, what’s more? I not only found forgiveness in my heart towards them and myself, I am now friends with them once again, and consider them a major part of my life. When we started talking again, it was like we never stopped. We fell back into sync, despite our different lifestyles, because as it turned out our friendship was based on more than circumstance, something deeper. We were initially drawn to one another and became friends not because we had to be around one another in school, but because we genuinely liked who each other were at heart –something that cannot be moved by illness or any other life changes.
So, when I got autoimmune encephalitis after rekindling our friendship, I worried it would break us up again. I was so insecure I debated even telling them …but you can’t really hide something that serious. So I just told them plain and simple when they asked what was going on, no dramatics involved in my explanation –no indicator that I expected them to understand, learn about the condition, or counsel me in anyway (let’s get real, if they would have tried to advise me on an issue they knew little about or had just heard of while I had a team of professionals on hand and had researched it all inside and out myself, I would have been a little insulted). Sure, I would quickly rationalize it was coming from a good place …but, if I’m being honest, not before my ego was bruised and reared its ugly head).
The result? They simply and genuinely wished me the best, and we went on with our normal chatter. In the past I thought the things I used to talk about with them would seem empty while sick, which is why I thought we couldn’t relate. Turns out, it was just the thing I needed, to be reminded that there is more to life than illness, and that there is a version of me that is not sick even when health conditions are present. In fact, especially when they are present, because its during those times that our conversations save me from wallowing and instead leave me laughing and feeling upbeat. The moral of the story is, if you have a chronic illness, give people a chance to be a part of your life, even if they will never understand it. Understand that they cannot possibly understand it, and that that is okay, because really, why WOULD you WANT them to be able to understand what you were going through? That would mean they would have to endure the same excruciating pain as you, and why on earth would you want that from a friend?
So, don’t expect your pre-illness friends to talk to you mainly about illness or health related topics, but this doesn’t mean lying to them and hiding your truth either. When they ask how you are or what’s new in your life, there is a way to tell them you have been sick, started a new treatment etc. without attaching dramatics to it. Then, you can move on to talking about other things, which I assure you is a much welcome reprieve when sick.
Also, one more thing on the part about understanding that they will never understand: rest assured, there will come a time in life when your friend(s) go through something you couldn’t possibly understand, and you would hope that they would not cut you out of their life as a result, just as they may likely hope you will not cut them out of yours now. However, if they do make it obvious that they don’t want to be friends because of the illness (in which case they really are just shitty people, or more than likely just extremely scared people who fear the unknown to their core), you can then, and only then, write them off.