What It's Like to Fight for a Chronic Pain Diagnosis

In talking to others about chronic pain and chronic illness, there is one theme in particular that keeps coming up. The idea that being not believed is a huge part of the problem. Having dealt with both mental illness and chronic pain over the last few years, I’m all down with the invisible illness speak. I’m on my way to gaining a medical degree through experience hours alone. It can be lonely, at times, being in this bubble where everything seems alright when it isn’t. Not being believed, or being told that it’s in my head, has been a big part of that.

If you look at me, you’re not able to spot it straight away. I look like a normal, slightly overweight, 25-year-old woman. That tired look can be attributed to my toddler, who, while thankfully he has started sleeping properly, is a tornado of energy in waking hours. The blank stare that comes over me, that’s just me getting distracted. There isn’t a big sign hanging over my neck saying, “Not getting proper sleep because my back is in bits this week,” or, “My meds have given me brain fog so I lose track of concentration half way through a sentence.” I look, for all intents and purposes, like there’s nothing wrong from the outside. Such is the case with many chronic illness patients. We’ve come to terms with the fact that it’s not going to go away today or tomorrow, so we need to adapt. We need to put on the brave face. We need to pretend that everything is alright.

The alternative is to live in a world where everything revolves around the pain. I’ve had those days and they are bloody miserable. I feel like I drag everyone down with me. The feeling that I am boring people by talking about the fact that I am still in pain is omnipresent. Those days make me bitter and angry at the world because it isn’t fair that it has happened to me. I’m 25 and my body acts as if I’m 80. Actually, scratch that. My 81-year-old grandparents have much more active lifestyles and exercise regimes as I do – and my nanny has had her hip replaced! Case in point: I was told that I’d have to do beginner sessions of hydrotherapy before being allowed to do the kind of classes that nanny has been doing for months without a bother.

Some days the bitterness and the anger consumes me. But that isn’t productive, and it’s no way to live. I’ve had to learn to let it go. One of the most infuriating parts of my chronic pain is that there are some things that are simply unexplained. While it’s clear that it does all come back to the injury, there are little things that pop up that don’t seem to make sense. This is the case with a lot of pain patients; there isn’t always one test that will show the exact problem and the cause of it. Many times, it can be a combination of factors that come together to create what feels like a pain shit storm going on in your body. Unfortunately, this doesn’t go well as far as dealing with the medical profession is concerned.

I have had a mix of experiences with different doctors, and have spoken to many others who have had the same experience. Some doctors have a greater understanding of pain management and chronic illness than others do – it’s dependent on their experiences of treating patients. The good ones listen to their patients, do their research and don’t just shuffle them off with the assumption that it’ll all work out fine. The not so good ones? They make their patients feel like crap about themselves. If it isn’t in the tests, it simply doesn’t exist, and so we have two options. The patient is making it up, or it will just go away by itself by magic. Neither of the two of these offer much solace to someone who is just dying for an answer as to what the hell is going on with their body.

For most people, getting a diagnosis of an issue with their body that may require surgical procedures is considered a bad thing. It’s something you really don’t want. For someone who is dealing with an undiagnosed chronic illness, it’s all you want. A name to put to the feeling. To feel like you’re not going mad. It’s worth so much to know that this thing that is happening to you is real, and there is an end in sight.

It may be a long old tunnel, but theres someone waving a torch at the end of it. I sound very dramatic saying it like that. However, when you’ve spent the last few years trying to shove the puzzle pieces together and getting nowhere, when a picture starts to form the eureka moment, it is joyous. And then, of course, it’s not, when the realization of more procedures, more tests, more poking and prodding and things to fix kicks in. That’s a whole other issue. The diagnosis makes such a difference. It’s like being stamped off on not being “crazy,” to see there is a medical reason for this pain, for these feelings.

For me, it was the culmination of three doctors appointments, two weeks of chronic pins and needles in all my limbs, 24 hours of a tremor in my hand and one, “Ah sure, it’s probably not multiple sclerosis,” from a doctor I’d never met before. I was referred to the acute medical assessment unit in my local hospital by my doctor, who while not frantically worried, wanted to get it sorted as quickly as possible. She wasn’t alone with that one – having started to get on top of the whole chronic pain thing in recent months, this setback was not what I needed.

The unit is amazing. It only opened last year an it’s still all new and shiny. Compared to the emergency experiences I have previously had, it was night and day – although much the same process. I arrived in at my time slot (8:30 a.m.), was seen by 10 a.m. by a lovely triage nurse who got my blood work done in one try, which never happens. I also got my first round of neurology tests done. I then went back to the waiting room, then was seen by an emergency medicine doctor who performed a litany of pokes, prods and questions to ensure all bases were covered.

So far, two rounds of, “But you’re so young,” have been recited in my medical history during the last four years. Yes, yes, I know. His recommendation, on speaking to his consultant, was that I was to be seen by neurology and sent for an MRI. As I was mobile, I would be slotted in between the trolley patients for the MRI so it was a matter of waiting for a slot to come up. And wait I did. By the time I got out of there that evening, it was 6 p.m. (I’d been there 10.5 hours), but I had my MRI results and gotten a referral for further tests with the neurology department.

The MRI revealed that my brain was perfectly fine, but my neck had bulging discs. I’m fairly sure most people would react to that with a groan, or some upset. My first thought wasn’t that though, it was, “It’s not a mystery anymore.” A diagnosis I can work with. Disc damage is shite, but it’s not a massive Greys Anatomy-esque brain tumor, or unexplained symptoms. While it’s just another thing to add to the chronic pain pile, it’s one with an answer. If that’s physical therapy, surgery, voodoo magic – that’s yet to be decided. The fact is – it’s real, and recognized by the medical professionals I’m working with. And that means it isn’t just me going “crazy,” or rather, people thinking I’m going crazy.

Next week, I’ve have a nerve conductive study scheduled to figure out if I have other nerve damage. The discs apparently don’t explain the whole story. I’m told it involves needles and little electric shocks. I know I shouldn’t Google, but in the past, finding out everything I can about the procedure beforehand has put me more at ease. I’m hopeful it will give me more answers and a path to move forward on. Either way, the doctors are taking me seriously, they’re listening, and that is making all the difference in the world.

Invisible illness has tried to define me for the last four years. Chronic pain has tried to break me. I’m starting to see a light at the end of the tunnel. It’s blinking, it’s faded, but it is there. I’m going to come out of this a much more resilient person, hardwired for battle. I’ve learned to become my own advocate, to stand up for myself when what I’m saying isn’t being taken seriously. And now, safe in the knowledge that this latest symptom is real, I can move forward.

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Gettyimage by: MaximFesenko