I've been hesitant to write a proper post about coping with long term illness because I don't really know if I am coping with long term illness that well, nor do I feel like I am the best person to be handing out advice. I've already done a post on what is wrong with me so I won't be going into great details about the nitty gritty diagnosis details. I'm writing this so it can be some what cathartic and will hopefully be helpful for other people who are feeling alone with their illnesses.
One of the hardest aspects of being ill long term is that you of course don't feel on deaths door every day of the year, otherwise you probably would be dead and not just chronically ill. Unfortunately these good days haven't always been pleasurable for me, it often leaves me with a strange feeling of guilt- guilt that I'm not really ill, guilt that I don't have a job or a purpose in life, guilt that I haven't managed to sit my exams yet. It is only when these good days are followed by bad days that I realise why I haven't achieved all of those things, I am just not consistently well enough to commit to a job, exams or even enjoying myself. This leaves me with the dilemma that I don't feel I can enjoy life when I feel well but I also obviously won't enjoy feeling bad either. I try to live life as it comes ( trying to avoid slipping the phrase YOLO in here) but that isn't always possible. I think the most important thing to remember if you have been ill for a long time is to look after yourself, try not to worry that other people think you are lazy or not that ill, only you and those closest to you will know how ill you really are, try to listen to the people who care about you and know you properly. Just because you are well enough to go to Tesco on your own one day doesn't mean you are suddenly well enough to handle a full time job, it is more complicated than that.
Guilt is also something that will inevitability be felt by those who are ill for a long time. No matter what your illness is, you will find yourself asking "could I have done something differently to make myself healthier?". Whatever the answer is it is a pointless question to ask, you cannot change what has gone before but you can try to change how you live from now on. I also find myself frequently feeling guilty for how my illness has affected those around me, I can't help but feel that my health is not only holding me back but it is also holding back those who have to care for me, like my Mum. For me this amplified by the fact my Step Father also has a long term health condition and needs more care than what is "normal". I hate to use the word "burden" because my family have tried their hardest not to make me feel like I am a burden, but sometimes when I just cannot do the simplest of tasks, or need lifts to doctors appointments at stupid times in the day I do feel like my family would probably have an easier time if I wasn't this way. The only advice I can offer to help with this guilt that sits and eats you up slowly over time, is to try and imagine how you would feel if you had to care for someone who is close to you. If you were looking after someone in your family you wouldn't feel remorseful or annoyed, you would likely want to help as much as you can, if you do love someone you want them to be happy and healthy even if it does impact on your own life. There will always be times when you feel that everything would be easier if you are not around but that completely overlooks the fact that you can positively impact those around you without being in full health. You can still offer advice, make jokes, have long conversations and be there for people if you're ill, those are the things people would miss if you weren't there, they wouldn't just be happy because they no longer have to give you the odd car lift somewhere.
I already feel like there is so much I need to say about this topic but I know not everyone will want to read reams and reams of rambling about illness so I will probably end up doing follow up posts from this when something important comes to me. One of the last few points I definitely want to mention is advice for those around chronically ill people. If you know someone who has been ill for a long time and has to give up their job etc. because of it then it is important to remember that this person will probably be "grieving" somewhat for what they have lost. I cannot express how frustrating it is to loose the ability to do the things you love. Before I got ill I always enjoyed being a homebody, I'm an introverted person and I didn't go out that much, but I did have the option to- I would quite often go out for peoples birthdays, or shopping in a nearby city. Now I cannot manage these things that I used to enjoy, a lot of people assume that those who don't work are spoilt or lazy, but not working isn't fun at all if you can't go out and enjoy yourself, I don't live off benefits or go out all day splashing my cash because I am not well enough do those things either. I find myself frustrated because I am unable to do the things that made me, me before, I cannot help to feel that I living a stagnant life achieving absolutely nothing but likewise not having the freedom to be destructive either. People who are chronically ill will get upset that they have lost the ability to live their lives the way they would like to. For instance I found myself in tears a few weeks ago listening to my sister talking about starting her course at university, I couldn't help but feel I should be the one starting a degree. I felt upset that I cannot manage to look after myself, I thought back to when i went to an open day at Queen Mary University in London- my Mother and I went up the night before, traveled across London and walked around shops for hours, as well as going around the University itself. It suddenly hit me that I couldn't do those things anymore, I wouldn't be able to cope with the train journey up to London let alone organising myself so I could get around an open day or a busy shopping center. I felt overwhelmed with the realisation that I am barely able to attend open days for university this year, let alone apply and start a degree in the near future. Those with long illnesses will be hit with grief because in a way you have lost a major part of yourself, in becoming ill you loose your old self and become someone completely different in order to cope with your new problems. Sometimes I feel as if I am a completely different person compared to the person I was six months ago, I feel as if I am somewhat of an empty shell or just a person who is in pain and nothing else
It occurred to me the other night that I have been feeling so stressed about being ill because I constantly feel that I am under pressure to suddenly get better, to be cured from everything and go back to how I used to be. As negative as it may sound I have realised that I may never go back to "normal", that normal has changed to a totally different thing altogether. I may never be able to go up to London at 7am and walk around the busy streets until 8pm at night, even if I massively improve it will take a long, long time for me to have the stamina for that. I may completely recover but I feel fairly certain that if I do it will be a slow process, I won't suddenly wake up and be able to go on a long run. Once you let go of the idea that you will find a magic cure you begin to enjoy life a bit more again. You cannot live your life afraid of disappointing other people with your pain, you haven't asked to end up being ill and you cannot ask to get better in day. Although it may sound that I am being totally pessimistic, I really just being realistic, I now feel that it is more about if I get better not when I get better. This acceptance has made it easier for me cope and although it may not work for everyone I do think sooner or later with long term illness you will feel like this.
I hope this has shed some light onto how chronically ill people can feel if you yourself are having to care for someone at the moment- it can be difficult to know how to help someone, especially when the feelings around these issues can be incredibly complex. If you yourself are coping with long term illness then maybe this post has at least made you feel like you aren't as alone- it can feel like you are the wrong sized puzzle piece in your life but in reality you are just part of a different puzzle altogether.