When Getting a Diagnosis Feels Like Staring Into an Abyss


May is Ehlers-Danlos Syndrome Awareness Month and this week is Mental Health Awareness Week so I thought I would combine the two subjects in today’s 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 away. You probably go and see your doctor, maybe get some stronger painkillers, but 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 away, 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? 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, wearing your sunglasses with throbbing behind your 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 has reduced your sick pay to 50 percent 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 they once did. You are worried what the test will reveal and if the results 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 will be able to operate or treat you. However, your consultant tells you that you have a condition that is never going to go away; they can try and manage symptoms but it is not guaranteed and no symptom management will be 100 percent effective. Not only is this never going to go away, but it will progress and 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 and you are worried about everything. You have loads more medical tests to go through. You think, “This is it, this is as good as it gets.” So, at 4:00 a.m. 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. What your friends and family think because you have to continually cancel plans because you are sick. And you wonder if you are going to be this way forever with no let up because this condition tends to get worse, not better.

At that point you are staring into an abyss. If you happen to slip up just once and fall into that abyss…

But in the midst of a sea of hospital appointments, I am finding things to look forward to, like starting a course to learn how to meditate or having lunch with my sister. Even if it’s something small, having things in the future to look forward to is really important. It’s also important to talk, to be open with friends and family and to come to terms with saying “I’m not doing OK” and being alright with that. I think we all try so hard to cover up our illnesses and act like we are fine when we are not. Once I came to terms with saying I’m not OK, things changed for me, and that abyss started to look a little less threatening.

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