How to cope with Loss in Chronic Illness

When I think of the word "loss", the first thing that comes to mind is "the end of life how it used to be", is this the same for you?  There are many types of loss and this post covers loss experienced in chronic illness and how to cope with it.  I have just covered the main ones I could think of. I am sure you can think of more!

The loss of Sense of Self

The person you were prior to your illness maybe different to the one you are now. This is a difficult one to accept and I expect there are times when you think back to how you were and wish things were different, this is totally normal I expect most people have these thoughts, unfortunately it will not change things and only make you feel worse about the situation. How many times have you said "what If" I expect a lot as I have many times. How can you learn to accept the person 'you are now' and not the one 'you were' there is no easy answer to this, it can take a long time and you may never actually reach the stage of acceptance, with chronic illness there is no end, you may keep on experiencing loss over and over again. I am not sure that I have really accepted the person I am now but have just had to get on with life the best I can, with all the support and love around me.
With chronic illness like with a bereavement you go through a grieving process, there are 5 stages but no set pattern, you can repeat a stage several times before moving on to the next and may never complete all stages.

The 5 stages of grief are:

  1. Denial- you don't want to believe that something is happening to you and try to not think about it and push it to the back of your mind.   
  2. Anger- you can't change what has happened and so you look for people to blame especially the medical profession, loved ones 
  3. Bargaining- you look for answers as to why this has happened to you "what if" "if only" 
  4. Depression- Once you realise there is no way of changing the situation and your future looks uncertain, your mood can change dramatically and life may become worthless
  5. Acceptance- Realisation that this is the situation and there is no going back only forwards

Loss of  Sense of Self

When I received my diagnosis I had mixed emotions from being relieved to being scared and sad. I think I went through a stage of Denial where I felt what happened was all a dream and that I would wake up and life would be different. I then experienced anger, why had this happened to me and wanting to blame the medical profession for not diagnosing me sooner and then things may have been different. Then wanting to think "if only" I am not sure I experienced real depression just low mood.
My Sister announced she was getting married, I was obviously delighted for her but deep down was also envious, sad and a whole range of emotions at once, I would have liked to get married and it was around the time of getting my diagnosis and trying to come to terms with that, so not good timing unfortunately. About a year after getting married she announced she was pregnant which I was so pleased about but also envious as I would have liked this, I think I had denial at times but the thought of being an "Auntie" filled me with delight and gave me a real purpose in my life, something I really needed as I knew I wasn't going to make it as a professional singer, something I had aspired to be, with my health not being good this was not possible. I realised I would never become a Mum so being an Auntie was the next best thing and I just wanted to be a big part in the baby's life. When my niece was born I just fell in love with her instantly and just knew I was going to love being an Auntie to this beautiful girl and I think this was what helped me accept the "new me" I had a new identity one that I think I would accept in time. This wasn't the life I had planned but all my dreams of having all the things my little Sister had were not going to be possible for me unfortunately and this is a really hard thing to accept but you learn to cope in your own way.

The loss of friendships/relationships

I am sure you can relate to this!  It is a common problem with chronic illness unfortunately, due to the unpredictability of your condition arranging things are difficult and having to cancel plans at the last minute can be a reality. You learn who your real friends are, as they will accept your limitations and work round them. I have lost friends due to pain and fatigue, I have had to cancel plans on several occasions. Over time they got fed up and drifted away slowly. I felt a bit hurt by this as they made me feel guilty for not being well and wonder whether I should say "yes" to plans just to keep them happy and suffer afterwards. Instead of becoming depressed over it which I could have done easily. I looked for support from the online community, they have made me really welcome and I have made lots of new virtual friends through various support groups. This is definitely a way of overcoming loss as most of them are in the same situation as yourself, if that idea doesn't sound appealing then you could always join a club that you are interested in, you can search online for them in your area.

The loss of friendship in chronic illness

Relationships can become strained when you are suffering in pain all the time and unable to function normally, you may find you have more arguements over silly things which were not a problem before and your partner may also feel rejected. This makes you feel guilty that it is all your fault for being ill. They may have to provide care for you, this can cause stress as their role changes from being your partner to your carer. This is not easy for either of you and can really cause problems. If you have children as well they can become affected by your illness and may even need to help you at times.
Talking things through with your partner is the most important thing you can do and maybe what you both need, getting angry is not going to help in this situation and seeking professional help might be the answer if you are unable to sort things out. You may need to think about getting a carer in to help your partner out, in that way they can still be your partner and you receive the care you need.

troubled relationship
Relationships can become strained

 The loss of health

This can be a real big loss depending on how severe your condition is and the effects on your ability to be able to function well.
Do you need help with personal care? Domestic tasks? Cooking? Shopping? Medication?, you may need a mobility aid due to the loss of function of your legs. All these can have a massive affect on you.
For me losing my health is one of my biggest losses I have experienced, I have gone from being able to just about get around the house with a stick or crutch, to being pretty much bedbound in the space of a few months. Currently I am being hoisted for any transfers as my legs don't have the strength to weightbear, it is difficult at times as I need two people to hoist me, this is stressful for everyone concerned as my carers always need to be available to help.
Having a PEG-J inserted due to not being able to eat normal food properly and needing artificial nutrition to provide this has been a big shock for me but also the whole family as mealtimes are not the same anymore, I am connected to my feed while my parents sit down to have their meal. I don't go to restaurants anymore as there is no point really as I would just be sitting watching everyone eating and feeling left out.
My bowels are really affected and are unpredictable because of my colonic dysmotility, due to lack of senses from my bowels I don't get the normal sensations you get when you need to go, this can be difficult as I can get urgency at times.

I have carers coming in 2/3 times daily for my personal care as it is not right for my parents to do this, this is extremely difficult at times and embarrasing as you have strangers coming in your home and washing and dressing you, it makes you feel helpless, however you do get used to it after a while and can make some good relationships. Some of my carers are quite young so we chat about all the usual things and have a laugh, this is important to feel confident with your carers and have trust in them.

Suffering from PoTS as well makes life difficult especially when the weather is hot as it causes nausea, poor balance, fatigue, rapid heart rate, breathlessness, slurred speech all just from changing posture, so when I am hoisted they have to be careful with me as I pool blood in my legs quickly and struggle to get it back to my brain.

All these losses have had a huge effect on me as my life is different from what it was previously, what can I do about it? try and make the best of life and look at the positive things rather than negative, get involved in things you enjoy like for me meditation or craft activities, these can be so good for your mind and make you feel good. Take up a new hobby, this is why I started blogging as a way to meet others in my situation and help me cope with my condition knowing I am hopefully helping others by sharing my experiences. Spending time with my niece watching her playing fills me with delight.
Loss of Health

The loss of Employment/Income

Due to your chronic illness you may not be able to work or can but very limited hours, this can have a significant affect on your income that you are bringing in. In this situation you may need to enquire about any benefits you maybe entitled to due to your condition as there are so many different ones but some have strict criteria that you need to meet, others are not means tested.

Loss of Employment/Income


These are the losses I have experienced with my chronic condition and how I have coped. What losses have you experienced and how did you cope?

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  1. Emma thank you so much for sharing such a raw & honest post. I can relate on so many levels. Although you are living with so many hard & harsh realities of chronic disease, your love of life & your beautiful soul shines through. It was an honour to have an insight into your world. Thank you. Sam xx

  2. Thank you Sam for your comment. I am suffering but try and keep positive as best I can. x

  3. So brave to put your feelings out there for everyone to see, your blog is no doubt a big help to everyone suffering from chronic illness. You seem really optimistic despite any struggles, well done. :)