“Does it exist”?

 I cannot even begin to appreciate how hard it must be to be told that this crippling illness is ‘made up’ and ‘all in your head’. Wow.

 Yes, there are no conclusive tests for it yet, but how can you deny this is real? Anyone who says this clearly has not experienced it themselves.

 I am no doctor and have done very limited research into this, so I am not pretending to know anything that I don’t.

All I can say is that there are so many people suffering so much from CFS….. are they all making it up? WHY ON EARTH WOULD ANYONE WANT TO PRETEND TO HAVE THIS???

 Sorry, I’m getting a bit carried away here. I just want to illustrate my anger at disbelievers and extend my support to those who suffers CFS.

 If there are some doctors and ‘experts’ who say this does not exist, it is no wonder some friends and family may be skeptical. I guess part of what makes it hard to believe is the sheer duration of this illness. It has been known to last decades. Decades. This is understandably mind-boggling and hard to accept initially.

 This discussion leads onto my other post on Institutional support. Please check it out!

As friends and family please ask yourselves – is it better to listen to some ‘experts’ or support your loved one in need?

Ah yes. The ‘outside’ consequences of these illnesses on life, such as school & work etc.

 I have heard stories about some wonderful organisations that have held job positions for months and those that allow shorter hours and work from home. I applaud you!

 Then there are those that seemed not to care and worse, not even try to.

Some organisations have illness allowances or special consideration (schools & universities) for this sort of thing. This is great. However, we have to jump through a lot of hoops to get the paperwork done.

 For example, work will give you leave if you have a doctor’s certificate. So we need a doctors certificate – easy, right? NO. We can barely get out of bed – do you know how much energy it takes to go to the doctor? More than we have! And then it will take us a week to recover from the visit and completely slows down the process.

Ok, now we need to fill out the institutional form – easy, right? NO. Form filling out requires decision-making. We are too damn tired to hardly move, let alone think clearly.

So now we’ve filled out the form. All we need to do is hand it in – easy, right? NO. Some institutions require us to physically hand the form in. HELLO! What do you think is wrong with us in the first place!?

 But, to be fair, it may be hard for organisations to truly appreciate what these illness are like, especially if some ‘leading experts’ say CFS doesn’t exist. And perhaps there are scammers out there trying to capitalize on actual suffers, who knows?

So what do we do about it?

I’m writing about it and providing a place for people to share their story. If enough people want to help, we can change this.

 What can you do to help?

I have only been on the receiving end of care for Glandular Fever, so I cannot comment on this experience.

 What is it like?

What is hard?

What has helped you?

You are so important in during this illness.

 This illness is hard because we do no want to be in this situation.

We want to have the energy to be able to do things, even simple things like sit and chat for a while. So when the social situation comes up where we are enjoying ourselves, we already feel pressure to stay. It is like balancing on a blade, easy to tip either way. So then when there is any extra pressure to stay (out of politeness, embarrassment or being explicitly asked to), it is all to easy to do so. But this can be very dangerous for our health.

 I found putting checks into place against myself, such as setting a time limit before meeting with someone, really helped because there was a guideline for the other person and for myself.

 What’s really hard is when family and friends say things like “are you still sick? Surely you’re better now” or “why are you being so lazy – get up and do something!”. This is very unfair.

 Want to know what the difference between lazy and energy-sick is? The desire or will! We want to do things, but simply can’t. Lazy is when you don’t want to do something or cant be bothered. We would be bothered if we had the energy!

 So what can you do to help someone with these illnesses?

• Show that you care by being understanding
• Please don’t be angry or frustrated if we get tired
• Help us with physical things
• Show us that we are still part of the world by sending emails or cards

I found animals, flowers and nature helped. This might be just me, but to look at something natural like the sky or flowers, or pet an animal was calming and peaceful.

Fellow sufferers – what helped you the most?

Family & friends – what do you think?