Our grief is ongoing – It’s hard for us who are chronically ill because we feel like we are grieving for our old life back before we got sick. It’s hard not to look back and to think of all the things we used to do and all of the friends we had and seeing family all the time whenever we wanted. Going from doing so much to suddenly being unable to sit up in bed or unable to go to college/ work. I personally get very upset daily because it’s hard not to look back when you’re laying in bed unable to distract your mind from the replaying of the fun times I had and the things I used to do. Before I got poorly I went to college, I saw my friends regularly and spent a lot of time with my family, going on outings and holidays which I loved! I was a happy, creative, bubbly and confident person growing up. Then I got sick and am now bed/ housebound which is hard. I have a wall of photos beside my bed which makes me happy but also sad as it’s a reminder of how happy and healthy I looked. I am thankful for all of the good times I’ve had and for all of the memories I can look back on and smile. My grief is ongoing and as long as I’m sick I think it will stay with me.
We think we let you down – Telling people that I “don’t feel up to it today” is really hard to do. I always worry that they think I don’t want to meet up and if I keep letting them down then I will lose them as friends. We want more than anything to join in with you and we hope you understand. I prefer to arrange plans, where I have a day free before and after so that I can rest/recover, but this is not always practical. I only occasionally plan to meet up with people and even then I usually don’t know how I’m going to feel till the day. Having chronic illnesses is very unpredictable! It’s horrible not knowing if you will get better and when and if you will experience any relapses. Relying on people to do most things for you and watching them get their hopes up when you accomplish a challenge and think your heading into the right direction, just for the next day to leave you completely bed ridden. You might think we are just overthinking, but it’s only because we care how our illness not only affects us but affects those around us. We are sorry if we have let you down and have had to cancel any plans that we’ve made. It’s difficult for us to make plans because we can go from good to worse in a matter of hours or days. We are living with a cruel and unpredictable illness and having your understanding is so important to us.
Our moods change – Living with a chronic illness which causes extreme fatigue and pain that can have a negative impact on our mood causing us to sometimes become irritable, snappy, quiet, grumpy or tearful. Everybody gets irritable or grumpy when they are tired or in pain, it’s normal to do that. For us who are chronically ill our mood can change so suddenly depending on how we are feeling or how much pain we are in. We don’t have any control over our illnesses and we don’t mean to be snappy or grumpy towards you, it’s just very difficult for us to control. Living with a chronic illness which can vary constantly throughout the day is going to make anybody’s mood change drastically. We don’t mean to be like this towards our family and friends and we feel bad when we upset you or snap at you, it’s difficult enough dealing with our illness let alone having to try and control our mood at the same time. When I personally know that I’m not feeling well, I’m in pain and know I’m grumpy and tired I try my best to stay away from people to avoid snapping at my family and friends. Our mood is like a see-saw sometimes, one minute we’re up but the next we may be stuck at the bottom, tired and upset because we get so fatigued and in pain. We are sorry if we upset you, we are doing our best to control our mood to avoid upsetting our friends and family.
We fear getting worse – Having a chronic illness that has no cure and can flare up after any activity can be quite scary and upsetting at times. It scares me that even little everyday things like eating dinner or having a bath or shower is enough to wipe me out. Luckily after a day resting I will recover from that but if I push myself too much more it can cause me to relapse and it can potentially set me back weeks or months. Being diagnosed with an incurable chronic illness can be hard to manage and you can go from bad to worse within hours. We don’t know how well we’ll be next week, month or year, we may be better but we may be worse. It’s difficult get through the day without being in fear of making ourselves more poorly. It’s difficult not knowing how our illnesses may progress. Hopefully all of us who are chronically ill will be better as time goes on but in the meantime all we need is your love and support to help those of us dealing with these things that tiny bit easier. To think back on how poorly I was this time last year I was so confident that my illness wouldn’t get any worse and I would feel better by now but truthfully I’m 10 times worse which is scary for me and for everyone of us living with incurable pain and illness.
It’s hard communicating our feelings – When you have a chronic illness it can be very difficult to express how we are feeling physically, emotionally and mentally, especially when trying to describe a chronic illness many people haven’t even heard of before. We find it difficult to explain to people who don’t understand or believe what we are going through, even though at times we really want you to try. We can become scared to tell anyone how we really feel because we don’t want to burden you with our problems, annoy or worry you even though you want to help. It is easier for us to say ‘I’m okay” because just telling you how bad we feel can be too exhausting and make us feel mentally low, realising the harsh reality we are living in. Half the time we don’t know what’s going on with our bodies as we have so many problems/symptoms it’s hard to keep track. For some people, using other methods to express how we feel can be very helpful. I prefer communicating through song writing. I find it a good way of releasing my emotions. Music is my happy place.
‘Saying that you’re okay is so much easier than explaining all the reasons you’re not’
We are confused about the future – Growing up we dream about our future, what job we’ll have, what car we’ll drive or holidays we want to go on. For us who are chronically ill we once had all of those dreams, we never planned to wake up one day and have all of them taken away from us so quickly. The future is something which can be quite scary and also very upsetting to think, not just for me but for many others suffering with incurable illnesses. It can also be very difficult for us to plan our days because we never know how we will feel which is very difficult for me. I hate making plans and not being well enough to do them because I hate letting people down. Even though I find it very daunting to think about my future I still remain hopeful that I will start to build up my strength and start rebuilding my future I have always dreamt of. At the moment I’m just taking each day as it comes, whether it’s a bad day or a good.
We worry that our needs feel like a burden – Having to rely on friends and family to do things for us can make us who are chronically ill feel like a burden, we feel like you do far too much to help us and that we are worried of tiring you out too. I personally hate having to ask for help and I’d rather just struggle to do it on my own but when my body is too weak to stand or I need help with bathing, sitting up in bed, pushing me in my wheelchair, tiding up and things like that I have no other choice than to accept help. I have to also remember that I’m very lucky that I have people who understand and will willingly help me through anything.
We are grateful – Having a chronic illness is very difficult to live with, it’s also just as hard for friends and family to understand and accept what’s happening as they watch us struggle with simple everyday tasks like having a bath or getting dressed. Having a chronic illness myself, I’m extremely grateful for all of the help and support that I receive, both from family, friends and my doctors. Having these people mean an awful lot to me and to have people who won’t judge me and will help me with everyday needs such as washing my hair, getting dressed and taking me to doctors appointments can help so much. I know I probably don’t say it enough but I will be forever grateful to all of the people who have ever helped me to ease a part of living with my illness. To have people who are willing to help you with such needs is such a blessing, and even though it’s hard to accept that sometimes we may need help, sometimes it’s better to just accept the help and be grateful that someone cares and loves you that much to give you that.
We are hopeful – Having an incurable and debilitating chronic illness can be hard to know how and if we will ever get better. Even though there isn’t a cure now it doesn’t mean that there won’t be one in 5 years or 50 years time. It’s hard for us to remain hopeful sometimes and even though we may seem negative we definitely are hoping for an advance in medicine and better treatments to help our recovery. We are hopeful for so much, I will always remain hopeful for a cure for all chronic illness.
I hope you have enjoyed this blog post and learnt some of the things that us with chronic illness just want you as our friends and family to know. I apologise for how long it has taken me to update my blog, I have been too unwell. Please remember to share and subscribe to my blog for updates.
Sending you all so much love,