Randomly musing and missing being part of your life

A good friend recently said something to me that makes perfect sense, but yet, is something I have struggled to accept since becoming ill. People generally stay away from someone with an invisible illness, not because they don't care, but because they feel helpless to help the person they care about.

This makes sense. I know it does. On a purely logical level, I do understand. This is something that I have heard so many in the support groups cry and vent about. Family members who no longer invite you to gatherings, friends who don't invite your kids out to play with theirs, friends/family who no longer visit.

It is so extremely difficult to deal with. I have always been a home-body. Not necessarily someone to go out and party. What I have always done though, is enjoy spending time just being with family and close friends. I miss that. I have had to adjust to being a hermit for most of the week with a maximum of 2 days out of the week where I have to be in the office. Even that has become difficult, with more sick leave these days than before.

I have had colleagues, friends and family all say the words "I wish there was something I could do" to me recently. I do too. I wish there was something I could tell you to do. I wish I knew what would help. BUT, because I don't know what will work, and neither do the very qualified, highly specialised doctors, I do not have a straight answer to that statement. What I do know though, is that 'something' you may wish to do for the chronic pain warrior in your life, is just to be there. Coming to visit, even if it's just sitting and watching tv with me would be awesome. Sending a short message just to say hi, making sure meetings are not unnecessarily long.....those are 'somethings' in my book.

I have slowly, but very surely, felt my friends pull away. Colleagues and friends may be frustrated at my limitations, and I understand that. Just imagine how frustrated I am? How frustrated I am to have to plan my day to make sure that I do not have to brush my teeth too close to having to be in a moving vehicle because the combination would cause too much pain? Imagine how frustrated I am to have to avoid work gatherings that are in a place with too many windows/air conditioning/outside?
I know it must be irritating at times for you too. Irritating to have to hear about my pain all the time. Just imagine how irritating it must be to have absolutely no control over how much pain I may be in, over when an attack will hit.

Think of it this way, if someone had to break their arm today. Would you give them all the manual labour that needs to be done around the office/in the home? Would you tell them to get over it, pray the fracture away, deal with it because it isn't a terminal illness? Tell them to stop wearing a cast/sling to show everyone that their arm was broken? Would you stop being their friend for something that they did not have control over? I have heard statements to my face and behind my back, all to this effect. I don't expect pity, I don't expect my friends and family to be constantly asking me if I'm in pain (I always am). What I do ask for, and I am sure others with TN ask for the same, is for you just to be there. Just understand that this is scary for me too. I feel helpless and without any hope most days, and it would be awesome if you you said the same to me too, because then we could figure it out together.  For now though, unless I make the effort to contact many friends/extended family members, I have had to accept that their absence from my life is something I will have to live with. I just sincerely hope that it is because they don't know how to not be able to fix me. I don't want to think of the alternative, because that is a whole other post. A post about those who no longer want to be in your life because you can no longer help/do for them what you did before.....


To my fellow TN warriors, may the elephant on your face be gentle today, if not, may he go to sleep really, really soon.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader