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 profoundly affected appreciate that my health and quality of life could be much worse!
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!