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How I Have Coped With the Losses of 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 covers loss experienced in chronic illness and how to cope with it.

The Loss of Sense of Self

The person you were prior to your illness may be 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 may 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 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 five stages but no set pattern. You can repeat a stage several times before moving onto the next and may never complete all stages.

The five stages of grief are:

Denial – You don’t want to believe something is happening to you and you try not to think about it and push it to the back of your mind.

Anger – You can’t change what has happened and so you may look for people to blame, especially medical professionals or loved ones.

Bargaining – You look for answers as to why this has happened to you. “What if…” “If only…”

Depression – Once you realize there is no way of changing the situation and your future looks uncertain, your mood can change dramatically.

Acceptance – Realization that this is the situation and there is no going back, only forward.

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 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 – maybe then things would have been different.

My sister announced she was getting married, and I was obviously delighted for her but deep down I 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 to happen to me too.

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 – but with my health not being good this was not possible. I realized I would never become a mum so being an auntie was the next best thing – 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. I think this was what helped me accept the “new me.” I had a new identity – one 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. 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 can be 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 around 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. I wondered whether I should say “yes” to plans just to keep them happy but struggle 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 you are interested in. You can search online for them in your area.

Relationships can become strained when you are in pain all the time and unable to function “normally.” You may find you have more arguments over silly things which were not a problem before, and your partner may also feel rejected. This may make you feel guilty, as if it is your fault for being ill. They may have to provide care for you, and this can cause stress as their role changes from being your partner to your carer. This is not easy for either of you. 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, and seeking professional help might be the answer if you are unable to sort things out. You may need to think about hiring a carer to help your partner out – that way they can still be your partner and you receive the care you need.

The Loss of Health

This can be a real big loss depending on how severe your condition is and how it affects your ability to function.

Do you need help with personal care? Domestic tasks? Cooking? Shopping? Medication? All these can have a massive effect 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 bed-bound in the space of a few months. Currently I am being hoisted for any transfers as my legs don’t have the strength to weight-bear. 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 – I would just be sitting watching everyone eating and feel 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 two or three times daily for my personal care. This is extremely difficult at times and embarrassing, as I have strangers coming in my home and washing and dressing me. It makes me feel helpless. However, I have gotten used to it after a while and have made some good relationships. Some of my carers are quite young so we chat about all the usual things and have a laugh. It is important to feel confident in your carers and have trust in them.

Having POTS as well makes life difficult, especially when the weather is hot, as it causes nausea, poor balance, fatigue, rapid heart rate, breathlessness and 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.

The Loss of Employment/Income

Due to your chronic illness, you may not be able to work, or can, but have very limited hours. This can have a significant effect on the income you are bringing in. In some situations you may need to inquire about any benefits you may be entitled to due to your condition, but some have strict criteria you need to meet.

I was working for a charity on very reduced hours due to my pain and fatigue. I was lucky to have understanding bosses to be able to do this. Not all employers will make these allowances.

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. This is not always easy to do, even with the best intentions. Try to get involved in things you enjoy. For me, it’s meditation or craft activities. These can be so good for your mind and make you feel good. Or 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 total delight. They do say having pets or young children around is so good for mental well-being.

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?

This post originally appeared on My EDS Journey.

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Thinkstock photo via kieferpix.

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