I assumed when I was younger, my health issues would hopefully only be a minor blip. I thought that medication would potentially solve some of my problems so I could become relatively active and normal again, like my peers. I asumed this because I had youth on my side only to find out u ow wrong I was. Those with Ehlers Danlos Syndrome and similar multi systemic, chronic, disabling illnesses come to learn it is something you deal with heavily, everyday. It us something you feel so lost over. Most of my day revolves around and is consumed by pain and sadly, it seems like it's been that way for most of my life. This segregates me from society like nothing else, despite all of the wishing and wanting in the world to be a part of life.
My Grandad said to me many years ago, never expect people to feel sorry for you because you have an illness. I have never wanted people to feel sorry for me in any way shape or form, I've just always expected people to be grown up and mature enough to relate to my situation. Compassion can go an incredibly long way, yet many youngsters can be incredibly selfish in their ways, especially when it comes to support. Despite believing their was a right way to go about my kind of situation, the truth is, how could I expect somebody to relate to this situation? I was asking people who had no cares in the world or who had never been through similar circumstances to relate to me, being a young person like them, but one who was chronically ill. One who was bed bound and unable to join in with almost everything.
Kids and teenagers only assume serious health problems come in the form of cancer or terminal illness, unless of course they live with or around people who have other illnesses. Illness that still affect day to day life, but that the public turn a blind eye towards. The most anyone else my age has experienced health wise is a bad cold, a spell of the flu that goes away after a week or sickness from too many drinks on a night out. They soon forget this saga ever happened and go back to their normal schedule, but that doesn't happen for people who have chronic illnesses. We can't even get to the point of a schedule. The process of getting better does not occur within our lives and we are forced to be confined to our bedrooms and homes for days, weeks and months on end before we can venture out into the big wide world again. Even then, it is usually just for a day which can feel devastating. It feels like you are an animal being tormented by a treat until you do a trick.
A doctors favourite question to ask at appointments is whether you keep in frequent contact with friends. I am always incredibly rational and respond yes, however I also explain that I understand how everyone has their own lives to get on with and that I don't want, nor do I expect their lives to revolve around me. Life evolves, people move on and have commitments more important than socialising. However at times, I wonder if our limited group of friends really understood the impact they could be making on us if they decided to just check up on someone who is chronically ill. It would most probably make our day a little brighter and our isolation a little less intense. All we really have is our own company, which can be incredibly difficult. It is not like we can just get up and head outdoors, we are stuck in bodies that fight against us.
I know that if the shoe was on the other foot, I wouldn't desert a friend who had an illness. Maybe I can say that because I have been in this position for many years and felt the impact of being drastically isolated and alone. Maybe I know that those who are chronically ill really need a friend at the best of times because I lost so many. Just a friendly face and someone to give them abit of normality. Some inclusion within a social element. My two best friends know when I need my own space to deal with my pain, they never put any pressure on me to do things or if I can't see them. They are also understanding when I have to cancel plans. When I have a rare trip out with them, they cater to day to my needs and take some of the extra pressure off by offering to do the things they know I find draining without me actually saying so. They are truly amazing and I am incredibly grateful for their patience, friendship and for sticking with me through the difficult period and transition in my life, but they also have their own loves to lead. So I often see them once every few weeks or months. It's the truth being limited friendships and chronic isolation from disabling health issues.
I have lost the majority of my friends. I can count on one hand the people who I do have as friends and they are extremely good to me in the given circumstances. I can remember having so called 'friends' who used to think I was making excuses and didn't want to spend time with them rather than believing me when I told them I was too poorly to leave the house. The often would tell me I was lying and just choosing to spend time with others instead of them. Or that I was a horrible, selfish person. This was never the case, in fact it used to upset me so much that I isolated myself even more to please everyone as I felt like I couldn't win. I was living on a time crunch even as a teenager and always paid for the little activity I completed, yet hid this from the world.
It does hurt when you see big groups of friends and feel worlds apart from those people who you once knew. It does pain me when I see life evolve yet still feel so stuck in my health circumstances. I do often find myself feeling imcredibly sad at how lonely this illness has made me feel. Especially in parallel to other friendship groups of my age. I've never really been apart of that aspect and do wonder how it would've been. I don't feel normal, I don't feel I have much confidence around strangers and I certainly don't feel young in myself, my mind and my lifestyle. Sometimes I wonder where I would be in life if I didn't have this illness. I wonder if I'd have loads of friends or would have learned the hard way whether they were true or not. I found out from a young age who my true friends were through being chronically ill. Whilst it was a hard process but maybe it helped me cherish the friendships I have had for nearly 10 years.
Things have changed now, my friends come round and see me in all my ill glory, in my usual uniform as we joke which is usually some comfy pyjamas and fluffy socks curled up with a blanket on the sofa in my front room. Seeing me like that now to them is normal (I hope), it also makes me feel better because it's my normal. I don't hide myself in makeup up and put on the act on like I once did. They understand my pain, the basics of my health problems, my limits and most importantly they become a great distraction for an hour or two and make a dark day of pain a bit brighter. Sometimes they ask questions about how things are going health wise, sometimes they don't. I wouldn't want to force the topic of my health on anybody but I also wouldn't want to give a false impression that things are fine and dandy. I also secretly hope I have raised some awareness of rare illness to them, in what I do choose to share.
Friends do come and go, more so when people are ill and more isolated from friendship groups. Typically unable to meet up often and unable to join in because of pain.It can be a lonely process. However, it also does highlight the people who truly care, these are the people worth your love and friendship.
So I urge you, if you are reading this post and are not ill yourself but know of somebody who is, please make the effort to text, ring or go to see them. Don't push them away just because they don't fit the criteria of somebody else your age. Don't isolate them because they can't do the things you do. Instead go round to their house and sit and talk with them for a few hours about anything and everything. Support them if you want to or be the distraction they may be craving. More importantly, let them know you are there for them, in spirit or physically. Enjoy their company and value their friendship despite them not fitting into the normal friend category.