A fellow patient advocate that I follow on social media put up a very profound post yesterday that resonated with me so much. It said how you “can be in a room full of people and still feel lonely”. It hit me so hard reading this as it is often exactly how I feel. I often feel like I don’t fit in anywhere anymore. I have lost so much of where I am. I often wonder if there is a point to going to events such as Xmas because Im not sure how much I contribute and how much I would I really be missed if I was not there (in fact I doubt I would be as there have been many events I have had to leave due to ill health hoping that maybe someone might accompany me and help me but they don’t I am just left on my own).
Having a disability and chronic illness (particularly one that varies) is a tough gig, but the toughest bit is the isolation and feeling of being left behind. The isolation is so tough particularly when you feel isolated despite having people around, mainly because people are around you but you are not involved. It is so hard when just getting up and getting dressed exhausts you, that then having to make extra effort once you are where you are meant to be is almost too much, the little things like conversations become so hard. Even when there are fall outs I just let them slide and end up suffering because I do not have the energy to fight to defend myself.
This past 2 years almost since I had the abdominal issue have meant I have spent so much time on my own (with Ghillie of course) and it has given me time to reflect on a lot of things, think about where I want my life to go and what I want to be doing. I have realised that if I want to do something or go somewhere I need to do it on my own steam and not rely on others for help because when I have asked for help weather it be for watching Ghillie or something else I think I have the help but then I have to make other arrangements last minute. It is times like this that it really does make you feel so isolated and hits home even more that it really is only your true friends who stick around when you need them.
I sometimes think people forget just how much stuff affects you. So often I find I get upset by conversations and that has happened a few times recently because I feel like I have had so much taken away because of illness particularly things that I love yet people forget how much a topic might hurt you to hear about it. I try to pretend it doesn’t matter but it cuts deep. I wish I had the guts to say to people if they could save a conversation for another time but I don’t want to be told I am being dramatic as I have been told that before. But it was really hard hearing things but also it made me feel even more lonely, invisible and isolated which brought me back to the post about being lonely in a room full of people.
Despite the last 2 years being some of the hardest it has given me one really good thing and that is back being involved in sport. Being part of an adaptive sport I am around people who understand the hardships, and get that you cant always be there, we take the mick out of our health and know that the others understand why we have the dark humour. I just wish others would understand this too. I get fed up of being told I need to be careful or if I am sure I should be doing something but my life before I got involved in adaptive sport was non-existent, I could and can go days without speaking to or seeing other people (apart from passing regulars when walking the dog), its not a life and what is the point when you don’t have a purpose in your life.
While I know I may not be able to feel less lonely when I am in a room full of people I do know that I can try and ensure that I surround myself with people who understand it and get that living with a chronic illness and disability is hard and it only gets harder over time not easier. So many think because you are out it means you are better but it is not. You will just be paying for it for days to come and have been preparing for it in the days leading up to it. Next year I have a lot of plans and things I hope to achieve and do but I don’t want to speak about it because I do not want to be told that I shouldn’t be doing it or have questions about it. I don’t want to be stuck where I am. If I do get more unwell doing things then I need to at least try because if we don’t try then we don’t know what we are capable of.
Life is too short and we never know when it may be halted so I want to live and try things. As the saying goes:
ANONYMOUS-ASTHMA 