For the last four years I have lived with a third, undiagnosed long term illness.
I have been getting sicker, and this had posed a new set of challenges and complications which could have possibly been triggered by treatment of my first chronic condition.
Living with endometriosis is one thing, but living with an unknown condition is equal parts terrifying, upsetting, frustrating and lonely. You can’t read up on condition websites, you can’t join support groups and there’s no treatment options until you have a name.
I want to raise awareness of the long-term limbo of being undiagnosed, as unfortunately having endometriosis seems to raise our likelihood of developing another long term condition.
Nearly ready for diagnosis
I talked about getting a second diagnosis of Joint Hypermobility Syndrome, well since then I’ve developed symptoms that aren’t endometriosis and aren’t JHS, so it seems another illness is on the cards for me. As soon as I know which one I’ll let you know.
What I can say is that I am closer than ever to knowing what’s wrong, I’d just rather talk about it when the little question mark next to the condition is taken away from my medical notes.
Getting a diagnosis after one condition is even harder
I am a seasoned pro at leaving specialists, remembering my manners when some people don’t deserve any. Thanking them for their time and effort as I leave.
I have lost count of the number of times that a consultant has said they don’t know what’s wrong with me, that I am a complicated case, that they’ve not seen someone with my precise set of symptoms before.
Two doctors have even gone as far to state that I can’t be in the pain in the areas that I am suggesting and my pain must be anxiety related. They then cannot explain how I ace their clinical tests for anxiety. Here’s a clue – it’s because I don’t have anxiety, I’m in pain.
I’ve lost count of the doctors who are so certain about what I have – when I am less convinced. It’s hard not to be cynical of the diagnostic approach at this point. What I can tell you though is that your instincts as a patient are normally right. Sadly, you have no choice but to submit yourself to a barrage of tests at the advice of your doctor to rule things out.
One doctor (when grasping for something to say) told me that at it least it wasn’t a serious problem. This didn’t help. By saying that they were also saying that the problems I already had were not serious (they are to me), and besides, how can they be certain its nothing serious when they don’t know what’s wrong? It makes no sense at all.
As such when I get my diagnosis, it will be a diagnosis of exclusion – so everything else it could possibly be has been ruled out.
The people who should be helping you can make it harder
If you’re in this limbo too then I really feel for you. Perhaps you’re trying to find out your first condition or your third. Either way it’s isolating and lonely.
Doctors want to help but have so many people to help it feels like they focus on the easier cases that have defined care pathways. I have seen more doctors, consultants and physiotherapists in the last three years than I have seen for endometriosis in my seven years of living with it.
I’d rather doctors were honest with me and said when they didn’t know. Rather than guessing and giving me false hope. They go through the same sense of excitement as me in our first appointment, thrilled to try and crack my difficult case. All of them excited when they think they can fix me. A few have called me cynical and negative for not being more open minded about their ideas – which are good ideas. I’ve just had my hopes dashed too often to get excited with them.
In the UK NHS patients face long waits for treatment and referral. Unfortunately I get the impression that some consultants and medical practitioners are finding it harder to believe I am unwell because I am still able to work. No one’s actually said this to me, but its come close to the surface of a couple of occasions, which is flabbergasting.
I am not unfeeling about my pain. I just can’t get upset about it anymore. Even if it would help me get treatment. I know how hard it can be if I fall to pieces because of pain and exhaustion. It might help me get treatment in the short term but it will take so much longer to put myself back together. I can’t afford the time to dwell, so I keep busy and it feels like being penalised out of what is my necessary coping mechanism for pain.
Don’t worry about it?
I don’t like it when people say this either. We can all feel how we want to feel about a situation. Feelings are unique to us so feel however you want to feel about pain and illness – including worrying. Worrying too much isn’t helpful, but a little worry with chronic pain can be helpful, and it will keep you safe, preventing you from physical injury. It’s also understandable to worry when no one can tell you what’s wrong with absolute certainty in the first place.
For example it’s reasonable to worry when walking on a frozen lake – this is not something I recommend at all but it’s a good visual metaphor for pain. We start to walk gingerly on the ice at first, even though others may tell you to speed up, you know what is a comfortable pace for you. Over time (and much testing) you realise that the ice is thick enough to support your weight and you relax, but never enough to forget that you could fall through the ice at any moment.
I want to find what’s wrong because I am worried. I am focused on it in the way that only you can be when it concerns your body.
Lastly, but most importantly, If a doctor or consultant can find nothing wrong with you and you’re still in pain – this does not mean that there isn’t something wrong, the cause just hasn’t been found yet.