How can others understand if we can't understand each other?

Sadly I've noticed that there is often a lack of understanding and empathy within the M.E community for others who are at a different level on severity scales for M.E. Over the years I've heard so many people who are severely affected complain about what they've read within general M.E groups.

That they are sick of listening to people complain about how awful they feel or exhausted they are after a day out or weekend away. People saying that those mildly affected don't know or understand how severe ME can be. 

Giving out that anyone with mild ME should count themselves lucky that they can get out and do things and should think about those of us who are severely affected, how our lives are and what we can't do! Do we as severely affected patients ever stop to think about someone with mild/moderate ME and how their lives are affected?

I'm severely affected with ME, I know and fully understand that it can be hard and often upsetting when hearing about things people have done or have enjoyed that you can no longer do yourself. Seeing posts and pictures of others with ME enjoying a fab break away when my biggest achievement that day may have been managing to get out of bed long enough for the bedding to be changed. 

I'm always glad to see such posts but at times it highlights the reality of my situation and the things I can no longer do now. I think this is the same for others within the severe category.

I think we need to try to understand each other within the M.E community and what life is like for those who fall into different categories instead of judging and criticizing - we all get far to much judgment and criticism of us and our illness from elsewhere! 

Also if some people mildly affected don't realise how severe ME can be why don't those of us severely affected tell them? As an M.E community we all want increased awareness and understanding. 

Those who are mildly/moderately affected are the people who are out in the community, if they have an understanding about the lives of those severely affected they can tell others how severe the condition can be when talking about their own M.E.


People with mild M.E don't experience the same severity of symptoms and problems as those with severe M.E however that doesn't mean their lives aren't severely affected by their M.E! 

When someone is moderately affected and may use a walking aid or wheelchair it's obvious to others who see them that they have problems and recognised that they aren't able to do the same things as those who are well. 

However people with mild M.E look fine to others when they aren't. People who don't understand the illness expect those mildly affected to keep up, not miss nights out, family engagements etc 

 Anyone with mild M.E is suffering greatly, they can often take part in things with friends, manage to work or do 'normal' activities that others in their lives enjoy but suffer later for it - however their symptoms are often dismissed and  unrealistic expectations are put upon them by others who don't understand M.E.

Today I write this from a hospital bed, I know that tomorrow and the days following I'm going to be lying in this hospital bed. I hope that my health improves so that I will be out of bed but at the minute I can predict I'll spend the immediate future in bed.

 Having become used to life in bed this is easy now to accept. Many people with mild/moderate M.E live in a push crash cycle where they do as much as they can when able and keep pushing their bodies to do more which then leads to an inevitable crash. 

They then find themselves in bed suffering with post exertional malaise and with major payback from their activities and the fact that they pushed themselves beyond what their body could easily manage.

I remember when I pushed my body like that and how the crashes felt, going from almost feeling like you had a semi normal life to suddenly feeling completely deflated being stuck in bed again with no idea of how long this crash will last. 

When people with mild/moderate M.E crash and are faced with uncertainty of when the crash will end, being stuck in bed can be very difficult to accept. 

Their level of ability can fluctuate from one extreme to the other unlike someone severely affected who has fluctuating symptoms but pretty much knows how they will be overall in the immediate future.

So for anyone who is severely affected and does complain about how lucky those with mild M.E are and how they should be grateful for what they can do and not complain after a hard day at work or when exhausted after a day out. 

Try to put yourself in their position or remember a time when you were. Did you feel lucky and grateful that you were able to do things when you had payback and felt so alone because no one understands and puts pressure on you to do things you can't? 

If you constantly had periods of being able to do things hoping your health was improving only to get shot down again and again when the inevitable crashes come would you feel happy that you could do things? Or frustrated that there was such hope and then total uncertainty?

Did you know then how severe M.E can become? When so few people in the lives of those with M.E understand or appreciate how hard this illness can be at any level - is it not understandable that when suffering from doing something people come to groups online to talk about how they feel with others who understand? 

When I was able to do things and existed by pushing myself I was aware of how severe M.E could be and even now, classed as 'very severely affected' I appreciate that my health and quality of life could be much worse and am very grateful that it's not.

If we want more awareness and understanding of M.E within the medical profession, family and friends, the media and general public - I think a good place to start would be within our own M.E community!

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!