May is EDS awareness month and this week is mental health awareness week so I thought I would combine the two subjects in todays blog. Mental health problems, particularly depression and anxiety go hand in hand with not only EDS but any chronic illness, and here is why:
Imagine you have a headache, that’s ok right, these things happen, you probably take a couple of paracetamol and carry on with your day. Now imagine after a week that headache has not gone, you probably go and see your doctor, maybe get some stronger pain killers, by this point you are probably exhausted from not sleeping properly and might even be off work. Now imagine that after a month the headache has still not gone, you still haven’t slept properly and you have been in pain every day for 30 days by this point. You are probably referred to a consultant. So, you wait, let’s say for another month to see said consultant. You still have a headache, you are still in pain, the throbbing behind your eyes is now so bad you try and wear sunglasses whenever you can. You are still not at work because the pain intensifies when you stand up and when you look at a glowing screen and you have not slept properly now in about 70 days. Of course, you are now also worried, what will the consultant say, what could it be and I have been off work for two months - what if they use constructive dismissal to get rid of me, how long will my sick pay last for, can my family afford to pay the bills if I don’t have a job? The day arrives when you see the consultant and you struggle to the office, with your sunglasses, throbbing behind the eyes and pain - the consultant wants to do some tests. So, you spend the next month in pain, off work and worrying. Now your company have reduced your sick pay to 50% so you are struggling to keep on top of your bills. There is mounting pressure on your partner who is worried about you and you are worried that they don’t see you in the same way that they did. You are worried what the test will reveal and if they will cause more pain - because of all of this you still haven’t slept properly now in nearly 100 days. So you have had your tests, you pull yourself together and you go to the consultant. Hopeful that even in the worst-case scenario they would be able to operate and treat you. However, your consultant tells you that you have a condition that is never going to go away; that they can try and manage symptoms but it is not guaranteed and no symptom management is 100%. Not only is this never going to go away but it will progress and it will get worse, throughout the course of your life.
So now you are left in a situation where you are in pain, you are not sleeping, you are not working, you are worried about everything. You have a load more medical tests to go through and this is it, this is as good as it gets. So, at 4am when you are lying awake, in pain, the slight glow of the moon is making that throbbing behind your eyes worse but you think it is silly to lie in bed with sunglasses on. You are worrying about all the tests, the diagnosis, the repeated appointments, the bills, the way your partner thinks of you. The way your friends and family think because you have to continually cancel plans because you are sick and you are going to be this way forever; with no let up because this gets worse not better and at that point you are staring into an abyss. If you happen to slip up just once and fall into that abyss, then…………