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9 Things I Wish My Loved Ones Knew About People With Chronic Illness

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Despite being chronically ill for a few years now, this will only be my second Christmas when I have been too ill to really enjoy everything that goes on. It has been a struggle, especially when others don’t understand what it’s like to have a chronic illness, so I’ve put together a list of what I wish people knew. Having their understanding would be helpful in making the Christmas season more manageable as someone with chronic illness.

1. Our grief is ongoing.

It’s hard for those of us who are chronically ill because we may feel like we are grieving for our old life from before we got sick. It’s hard not to look back and think of all the things we used to do and all of the friends we had and how we could see family all the time, whenever we wanted. It’s hard going from doing so much to suddenly being unable to sit up in bed or unable to go to college or 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 replaying all the fun times I had and things I used to do. Before I got sick 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.

2. We think we let you down.

Telling people I “don’t feel up to it today” is really hard to do. I always worry they will think I don’t want to meet up or if I keep letting them down that I will lose them as friends. I want more than anything to join in with you and I hope you understand. I prefer to arrange plans so I have a free day before and after for resting and recovery, 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 that day. Having chronic illnesses is very unpredictable! It’s horrible not knowing if or when you will get better and whether or not you will experience any relapses. It’s tough relying on people to do most things for you and watching them get their hopes up when you accomplish a challenge, thinking you’re heading in the right direction, only for the next day to leave you completely bedridden.

You might think we are just overthinking, but it’s only because we care how our illness affects not only us, but those around us. We are sorry if we have let you down and have had to cancel any plans 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.

3. Our moods change.

Living with a chronic illness causes extreme fatigue and pain which 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 those of 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 I am not feeling well, am in pain and am grumpy and tired, I try my best to stay away from people to avoid snapping at my family and friends. My mood is like a see-saw sometimes: one minute I’m up but the next I might be stuck at the bottom, tired and upset because I get so fatigued and have so much pain. I am sorry if I upset you. I am doing my best to control my mood to avoid upsetting friends and family.

4. 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 I will recover after a day resting, but if I push myself too much more it can cause me to relapse and 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. I don’t know how well I’ll be next week, month or year. I may be better but I may be worse. It’s difficult to get through the day without fearing I’m getting worse. It’s difficult not knowing how my illnesses may progress.

Hopefully those of us who are chronically ill will improve as time goes on, but in the meantime, all we need is your love and support to help make dealing with these things that tiny bit easier. To think back on how poorly I was doing this time last year… I was so confident 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 every one of us living with incurable pain and illness.

5. It’s hard communicating our feelings.

When you have a chronic illness it can be very difficult to express how you are feeling physically, emotionally and mentally, especially when trying to describe a chronic illness many people haven’t even heard of before. We may 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 you or worry you, even though you want to help. It is easier for us to say “I’m OK” because simply telling you how bad we feel can be too exhausting and can bring us down. Half the time we don’t even know what’s going on with our bodies since we have so many problems/symptoms that 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 you’re OK is so much easier than explaining all the reasons you’re not.”

6. We are confused about the future.

Growing up, we dreamt about our future, what job we’d have, what car we’d drive or holidays we wanted to go on. For those of us who are chronically ill and 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 about – not just for me but for many others who have incurable illnesses. It can also be very difficult for us to plan our days because we never know how we will feel. 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 the 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 one.

7. We worry our needs feel like a burden.

Having to rely on friends and family to do things for you can make those with chronic illness feel like a burden. We may feel like you do far too much to help us and we are worried of tiring you out. I personally hate having to ask for help – 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, being pushed in my wheelchair, tidying up, etc., I have no other choice than to accept help. I have to also remember that I’m very lucky to have people who understand and willingly help me through anything.

8. We are grateful.

Having a chronic illness is very difficult to live with, but it’s 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 I receive from family, friends and my doctors. Having these people who won’t judge me and will help me with everyday needs such as washing my hair, getting dressed and taking me to doctor appointments means an awful lot and 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 my life with illness. Even though it can be hard to accept that we may need help, sometimes it’s better to just accept the help and be grateful someone cares and loves you enough to give you that.

9. We are hopeful.

It can be hard to know how and if you will ever get better when you have an incurable and debilitating chronic illness. Just because there isn’t a cure now doesn’t mean there won’t be one in five or 50 years time. It’s hard for us to remain hopeful sometimes, and even though we may seem negative, we are definitely 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 illnesses.

I hope you have enjoyed this post and learned about some of the things that those with us with chronic illness our friends and family to know. Please remember to share this and please keep updated and follow me for more upcoming posts!

Sending you all so much love,


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Image via Thinkstock.

Originally published: December 13, 2016
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