To those who doubt chronic illness...please have more compassion

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When I am having a particularly difficult time with chronic illness, all of my concerns and worries in being chronically ill with an incurable condition seem to escalate. My mind begins to doubt any positivity I may have been trying to build upon daily and I am left with the turmoil of adjustment. Sometimes, I feel so low with the continuous, daily fight against pain that I feel like my heart is breaking over the outcome. I worry, I stress and I feel sad that life is particularly bleak at present. I feel low over never receiving any respite and quite frankly, I feel sick of being sick. I believe that this is a common setback in many who live with chronic illness. Knowing full well that life currently with these conditions, isn't really any kind of normal no matter the progressive, positive strides you try to implement.

I don't know about those of you reading this, however having received many different chronic illness diagnosis has made me incredibly compassionate for those who I am aware may be facing a tough lifestyle. Especially when those people are incredibly young. Maybe it is only because I have been in this position for a long period of time, but even then, I still think it is a morally correct attitude. Nobody deserves to be ill, yet it is a terrible shame to have a chronic, disabling illness when typically, your adult life should just be starting. You should not have to face such complex problems so young but you try your best to accept your fate as well as you can. Nobody should have to live in so much pain, that the majority of their week is spent in bed. It makes me more upset to think of others in that situation than it does for myself to often be in it.

Something my Mum has always taught me is that you will never be able to change another person's opinion, yet isn't that one of the concepts of learning in life?  I see this partly as frustration and partly as a challenge I want to tackle. Being chronically ill at a young age, opinions have become that of normal over the years. Some I listen and try to take on others, I just struggle to be on the receiving end of. I want to know why someone is so set in their ways when it comes to views on a specific incurable disability or illness when actually, they have never lived a day of it. My illness might be relatively unknown, but it is still having a drastic affect on my ability to live my life. I ponder over those in less fortunate circumstances with no support at all. It's a case of often wishing you didn't actually have an invisible illness and finding a forceful necessity to prove yourself. How can some people be so heartless, cold and unsupportive? I am lucky that for the most part, I have constant support from my parents. Yet when I cross paths with those who disregard my lifestyle or consistent pain, I can not comprehend how they could be so dismissive. Is it just because I don't have a high profile disease or short life expectancy? Does that make my chronic illness and pain any less?

During my time with my deteriorating illness, I have unfortunately been thrown opinions from those who think they know all the correct answers in life. The 'tough love' approach. I've been told how I should deal with my illnesses, how others would deal with it completely differently, been challenged on my pain, symptoms and limits, told to cheer up and that I am actually in a very fortunate position in terms of health. For the most part, when it comes to these kinds of people, we would have better luck drawing blood from a stone when it comes to them grasping any sort of understanding on our daily lives with incurable, multi systemic illnesses. How we are pretty helpless at the hands of something that has a grip on our bodies, trying our hardest to find the positive every step of the way, yet they probably would not believe that is true. It's easy to say, try and focus less on those kind of opinions and people, which often is the better and less emotionally painful solution. However, sometimes it is not so easy to escape.

Often, these people and opinions turn out to be closer to home for some in similar circumstances. Some people in this world will always have purely selfish mindsets and points of views. Yet how would they realistically fathom a lifestyle as such? Would they crumble in the circumstances of disability and ill health at a young age? Would they wish they had more support and helpful, yet positive comments to be on the receiving end of? The projected, outspoken high and mighty attitude is purely prejudice to those living with incurable, chronic illnesses and not in any way supportive or positive. It just makes us feel awful over limits we did not ask for, nor have control over.

My advice to those who have entitlement opinions on young people with incurable, disabling chronic illness. Put yourself in someone else's shoes and if your opinion is harsh and critical, evaluate if it is necessary to project. Just because you cant see the pain overtaking the body, does not mean is does not exist. Those in pain are not moping, they are suffering. They are not choosing to be unable to leave the house, they can't physically cope with or get their pain under control in order to leave the house as much as they wish too. They are not lazy by having to stay in bed, they are chronically ill with more pain in their little finger than you've possibly had all week. They are not miserable, they are probably feeling isolated, alone and depressed at the current state they call a life. Unfortunately, chronic illnesses are no where near to being a cold or the flu where life seemingly carries on. Some illnesses have symptoms that many people in this world, will not receive or deal with in a lifetime. Chronic, long term illness can sadly lead to a disability and housebound existence at many intervals for long periods of time. Chronic illnesses can require aids, countless medications, carers. It can hurt deeply to have those you regard as close to you doubt your pain, lifestyle or abilities. To feel judged and like you need to prove yourself and your chronic illnesses. To feel like you need to possibly break in front of them for them to realise how tough it is.

Be conscious around those who are chronically ill, they are probably not in a good place whilst staring in the face of abnormal adversity. With forms of health changing unexpectedly on an everyday or hourly pattern. Find it within yourself to support them on their bad days more than their good. I can tell you for a fact, that receiving support on the bad days, which are 90% more frequent in a month is of more worth to us than on the good days. Don't kick them when they are already down and struggling with adjustment to a new reality, one incredibly parallel to that of a healthy young adult. Any regular abilities of a young adult have probably gone out of the window and they are trying their hardest to adapt and accept whilst watching everyone else of similar age, live. Probably one of the hardest parts of having an illness.

What I was trying to get across that actually, when you smile or laugh, your pain is very much present. When you stand before someone, your pain is very much present. Pain is never not present and on a scale, it is probably never lower than a 6 on a 'good day'. It's not as simple as being told to get out more for your well being and to make the most of life by doing more. Being able to go out is not a task of ease, it is not something we can do second nature otherwise, well we would be working, attending university and socialising like the average young adult. Usually, our pain is so bad that all we can actually do is lie down and sleep. It's not that we do not want to, its that we physically can not shake the pain off the majority of the time. When we do, brilliant, however we are not pain free and that is important to realise. We do not dip in and out of pain, our unpredictable, quite frankly incomprehensible symptoms do not leave our side for any upcoming event. Life would still be working like clockwork if that was the case and we would not have the title of 'chronic'.Everyday is a challenge and we deal with it as it happens, as best we can. We do not have the beauty and joy in life to be completely spontaneous, to set time limits and to do as we please because pain, head to toe is a part of our package.

It can be difficult, yet try to remember that it is very easy for outsiders to make assumptions on your current lifestyle. However, there are always people who will understand. If you are new to this chronically ill lifestyle or have no support from others, let me assure you, you are not alone in your fight. There are many other young people who are just like you who have been through it and will be willing to support you. Weirdly, we were possibly once all in relatively good health, taking it for granted, not knowing what exactly was around the corner. It is a reminder that the less supportive people still have a lot to get through in life and may understand one day what it is like to need and provide compassion to those in need.

Isolation and friendships

One of my first and favourite blog posts I wrote and infact, at this moment in time, probably my second most viewed post was on the topic, "the struggle of maintaining friendships when you are chronically ill". Hopefully throughout life, ill or not, we will have friends who are there for us so this subject will always be a work in progress scenario. The balance of maintaining the friendships I already have has become easier as I've become older. However, not because of the reasons I once thought they would. I assumed when I was younger, my health would hopefully 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. How wrong I was, those with Ehlers Danlos Syndrome and similar multi systemic illnesses come to learn it is something you deal with heavily, everyday. 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.

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. However, 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 no similar circumstances to relate to me being a young person, like them, but one who was chronically ill. 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. 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. The process doesn't stop for us and we are usually confined to our bedrooms and homes for days, weeks and months on end before we can venture out again for a day.

It is abnormal to be chronically ill at a young age and there really isn't many people out there to relate to. Young people are eager to have role models or people they can look up to, who seem similar to them. There is nobody famous who a young person can look up to and say 'well actually, they are ill like me'. There is barely anyone on TV who is young and chronically ill. It's almost like people don't believe anyone under the age of 25 could have an illness. An illness which stops then from living an everyday life, leaves them isolated and bed ridden. It is pretty apparent that this kind of subject gets swept further and further underneath the carpet. Young people with illnesses are made to feel more abnormal through lack of understanding from peers and through other aspects and outlets in life.

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. 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. I know that if it was me, 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 times because I lost so many. Just a friendly face and someone to give them abit of normality. My 2 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.

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. 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 would obviously prefer and am incredibly grateful to be surrounded by people who have my best interest at heart and actually want to spend time with me, such as my handful of friends. It does hurt when you see big groups of friends and feel worlds apart from those people who you once knew. I do often feel 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've learned the hard way whether they were true or not. I found out from a young age who my true friends were, it was a hard process but maybe it helped me cherish the friendships I have had for nearly 10 years.

I started to realise that because this illness would be with me for the rest of my life, I had to be honest with those close to me and let them know that I couldn't do things like a normal person my age could and should be doing. If anything my health has deteriorated with age, my friendships have dwindled from handful sized groups to just a few people. But these are the people that have shown they really are true friends, have been there for me since the beginning of diagnosis, are worth the extra pain that may come from spending time with them. The one thing I am proud to have overcome is that I no longer see it as scary or daunting to spend time with them. I used to go to extreme lengths to put anyone off coming to visit me because I never thought anyone could understand how much pain I was in. I didn't want to see anyone and I didn't want anyone to see me looking so ill, I also didn't know the correct way to share my health problems with them. I didn't want to let my guard down and felt the need to protect the false state of 'normality' I had created growing up with these friends. I didn't want anyone to know how difficult things had become for me but I know now this wasn't the correct way to handle things, I only made it harder for them to understand and grasp that I was chronically ill.

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. 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.

The struggle of maintaining friendships when chronically ill....

Now this is a tough one, one that I stress over most days and have done for a good few years since I drifted from my circle of school friends. Teenagers naturally want to be socializing with friends as they grow older, its the normal thing to do. Live while your young and all that jazz (I really must stop listening to one direction haha), going out whether it be shopping, cinema, concerts, sports related activities or clubs and pubs once you turn 18.

A normal teen would probably just accept the invite to these activites and not bat an eyelid. The trouble with those of us who live in chronic pain is that our bodies instantly tense up like we know what is to come. We have an instant STOP sign in our brains.

My thoughts when somebody offers to do something turn into;

"I wont be able to cope while I'm out".

"They don't understand the amount of pain I'm in".

"They think I don't like them because I keep saying I cant meet up".

"I need to go out because I've been stuck inside my bedroom for too long and it might cheer me up".

"But my body is extremely weak".

"What if we are out all day?"

"I'm going to have to pretend I'm fine all day when all I want to do is cry".

"What if my blood pressure drops while I'm out like it does at home?"

"What if I dislocate?"

I know from personal experience I still always put on the brave face and front. This usually involves pretending I am not hurting whatsoever, my joints are totally fine and I definitely don't feel light headed or dizzy. That act in itself, is exhausting. I find it very hard to let my true guard down around even my best friends, as if I feel that being my true ill self would make them feel super awkward around a girl who looks the same as them but cant keep up with normal social trips out. It's always hard knowing you have committed to spending time with a friend but not being sure if you will be able to lift your head off the pillow when the morning arrives. The simple task of getting up and getting dressed that would've taken me 20 minutes back in the day now takes me hours. Including wanting to make my self look presentable with makeup, it takes me a good 4 hours before I am ready to leave the house and that is difficult if my friends want to set out early.

I have had to learn to be assertive, something I find difficult as I am a huge people pleaser. I spent some time with a chronic illness psychologist towards the end of 2012 who told me to know and understand that I cant change my body or its limits. The illness already has a grip on you, you need to take a bit of control back otherwise you will become even more isolated. You have to listen to your body when you are out because if not you will suffer with extra pain and agony the next day on top of your usual amount. This is a mistake I make far too often. She taught me to not make excuses but to be honest with friends about how much you are really hurting but also let them know that it would be nice to see them.

This is where the planning comes into it;

Try and figure out with your friend how you can make the day easier. Can they come see you at your house? Can you set a time limit on what you think you may be able to manage that day?
If you are out and about try and plan rest breaks. Maybe suggest going for a hot chocolate or coffee so you can sit down, or find the shoe department in a store and rest (one of my favs, resting while looking at shoes). My uncle who suffered with lung problems once told me his trick of pulling his phone out and shouting to his wife " I've just got a text hold on a minute" so he could stop and catch his breath.
I myself am still learning techniques when I take a rare trip out with friends once a month.
Because I don't go out a lot I feel like I lack confidence and have lost a lot of my character. Aswell as being very scared of pain while outside my comfort zone, I worry if somebody is going to accidently knock into me or brush past me when I am out while my body is hurting. I wonder if anybody feels that too?

I am lucky to have three understanding best friends. My mum and these three girls are the people I spend my outdoor time with. Although my friends don't understand completely what is wrong with me, they take me for what I am and I hope they don't find the time they spend with me too miserable or boring. I unfortunately had to leave school in year 10 and lost all but those three friends, it hurt at the time but I now know they are my true friends and there for me come rain or shine.

What are your experiences with maintaining friendships?