Accepting Chronic Illness, not giving in - just accepting that life will be different!

Accepting any chronic illness (or a few, as was my case with M.E , Fibromyalgia and PO.T.S) isn't easy, for many it can be completely overwhelming. Of course, it doesn't help that half of the medical profession, family members and friends often don't believe that the conditions exist in the first place or think that it's 'all in your head'! 

In many cases the people you would have assumed would be there to help and support you should you ever become ill aren't there for you, and are often dismissive of the fact that you are ill, or that there's actually anything wrong with you at all.

I found that accepting chronic illness is like going through the various stages of grief in no particular order and often jumping from one stage to another; shock, anger, denial, sadness, pain, feelings of helplessness, isolation, loneliness, and acceptance.

It makes sense with these illnesses that you go through a similar process to those of someone going through stages of grief after loosing someone You are grieving. Grieving for the person you wanted to be, the life you had, maybe work, hobbies and things you can no longer do, The life you wanted to lead with plans made for the future, you now can't do. It's like the carpet has been swept out from under you and no previous experience in life so far has prepared you to cope with this situation.

Feeling frustrated with yourself and the illness, angry and helpless because there's nothing that you can do to change things and this is not how you want things to be. 

Feeling alone and isolated because no one can help and no one in your life understands how you're feeling!

I think there's a similar path to acceptance for others in your life, whether it's your husband, partner, parents, kids etc. 

They are grieving too in a way, for what they have lost and trying to come to terms with how things are now and how the future and plans made will change because of the illness.

It takes time to come to terms with things, and you need to give yourself the time you need, to let yourself work through things, and let your head process everything.

 It helps that there are plenty of online groups on Facebook with hundreds of people who understand what you are going through because they've been there themselves and many are currently struggling with exactly the same issues! There are also plenty of organisations and charities with information and support.

I found and still do that guilt plays a major role, guilt about what I can't do, what I 'should' be able to do, guilt from other people about what I 'should' be doing. Guilt that I'm not doing enough, not good enough at what I am doing. Carrying guilt isn't good for anyone. An in situations that are beyond our control, there really should be no place for guilt or blame. But they can both be hard to let go of.

I learnt over time that nearly everyone will have an opinion on what you 'should' be doing but just as you do, they need to learn to accept that you are ill. Accept that you aren't doing things because you can't and not because you don't want to. Accept that in order for you to do as much as possible you need to be very careful with what you do and when. Accept that flares can happen and things can unfortunately change suddenly. 

Realise, that giving yourself a hard time for things that are beyond your control (or others doing that to you) isn't going to help you at all - in fact, it will do the opposite and make everything harder!

Everyone reaches acceptance about illnesses at different times and as I mentioned above can go through various parts of the cycle repeatedly. 

I think it's important to remember that your loved ones are also going through a process towards acceptance and you may not all get there at the same time! People cope with grief in different ways. It's important to remember this, and that you and your loved ones may be at different steps in the process. Also like with any grief, it doesn't ever go away - but it does get easier to cope with as time goes on. You won't always feel as bad as you do now.

 Just as there are groups for people with M.E and Fibromyalgia, there are groups, forums and organisations for partners, carers and family of those with the illnesses where people will understand what they are going through too. Resources for these can be found online or accessed through a carers assessment.

The best thing that you can do is try to build a support network, whether that's family, friends, groups online - just people that will be there when you need them! People who understand the struggles you have on a daily basis, because that is there reality too.

Find things that help you cope when you feel like you can't and that will help you to relax; a favourite show, audiobooks, meditation, doing crafts...whatever works best for you. 

Trying to limit the negativity and stress in your life also helps. The people who insisted I wasn't ill - no matter what myself, doctors or anyone else said are no longer in my life. It was a hard decision to make and I still care about them deeply but the relationships and expectations people had of me (due to not understanding my illnesses) were affecting my health too much so, I had to stop being in contact with them. Things improved when I wasn't constantly pretending to be well.

For a long time, I thought that admitting I was ill, admitting that there were things I could no longer do, needed help with or using aids to help was like giving up or giving in to the illness and letting it beat me.

It's not giving up at all - just accepting that life isn't going to go the way you'd originally planned!

 Using aids gave me freedom that I didn't have without them. I didn't want a wheelchair, but the alternative was being completely housebound. I wish I had of accepted using aids sooner than I did. I'd advise anyone unsure of trying something to do it. Others really mostly don't care and if they do, that says more about them than it does about you. Yes you'll get a few looks and possibly strangers being nicer to you but you're also doing what's best for your health and using less spoons by using an aid. Or able to do things you otherwise couldn't. The benefits definitely outweigh the few odd glances you might get or little curious stairs from little children.

You won't necessarily be able to do the things that you had intended but it doesn't mean that you're giving up, quite the opposite in fact - you're just moving on and finding another way to live your life. 

A way forward that works for you and works with your illness. Finding ways to adapt, setting new goals and discovering other ways to accomplish some of the things you'd set out to do in the first place!

Your life isn't over because you've got a chronic illness  - it's just going to be different!