The Waiting Game You Play When Undiagnosed and Chronically Ill
When you’re chronically ill and undiagnosed, your full-time job becomes what I’ve begun to refer to as “the waiting game.” But there’s nothing fun about this game, and there’s certainly no winner. It’s a cycle of doctors, misdiagnoses, tentative treatments, procedures and, as the name suggests, seemingly endless periods of waiting.
Let me explain how it works:
Something’s wrong. Are you sick?
It might have only been a few days, maybe it’s been troubling you for months. But you’re busy, you’re stressed. It’ll probably pass.
Time to do something. You go to the doctor, explain your symptoms. They examine you, ask some questions. Nothing too problematic. You’re told to monitor the condition, maybe take some symptomatic treatment.
Maybe it’s weeks, maybe it’s months.
Something’s still not right. Is this normal? Surely it’ll pass. These things pass, don’t they?
You finally head back to the doctor. The process repeats. There’s mild concern this time but no reason for alarm. Minor medication and monitor.
That’s good news, right? You’re OK. Then why don’t you feel confident? Maybe it’s because you know yourself better.
Your symptoms intensify. You’re getting sicker.
Should you go back to the doctor? Maybe you should see someone new.
You wait a while. Monitor your body. Something’s definitely wrong. It’s getting harder to keep up with your everyday duties. You feel your job slipping away and your once-loved lifestyle and social commitments are being replaced with a cycle of symptom management, rest and worry.
You’re sure you’re sick. This can’t be normal.
You go back to the doctor. This time you’re direct. You need something more some than symptom management. It’s been months.
Your doctor refers you on to a specialist. Finally. Someone who might actually give you answers. But there’s a two-month waiting list.
Your friends are wondering where you’ve been. You’ve cut down on hours at work. You’re worried, but you’re confident things will improve. Just get through two months and you’ll get relief. Right?
Your specialist seems great. They know what they’re talking about. Lots of questions. Some quick tests. There’s fair reason to call for small diagnostic procedures, but they’re not sure you’ll need it. “Have a think about it,” they say. New medication is given. Monitor. Wait.
You trust their opinion but you’re not sure things are improving. But maybe they are? They could be. Some days are good days. And you almost went a whole week without bad symptoms! Just as you think things are looking up, you get a familiar feeling. And now each time a symptom strikes it gets harder to stay positive. It’s still another few weeks until your follow-up appointment.
You’ve made your decision. You want the surgery. Your specialist agrees. If things haven’t improved, it’s time for bigger measures. You book a date. It’s a month away. How do you cope with another month of pain?? But you’re happy you’re being listened to and something’s being done. This will be it. Things will be better soon. Just get through this month.
The surgery’s done and they didn’t find anything serious. This is good news, right? Then why are you struggling to hold back your tears? How can you get relief from your symptoms without a diagnosis? How can you stop worrying?
Good news is you’ve eliminated a handful of diseases. So you’re getting somewhere. You’re ready to dive right back into the diagnosis process.
But you have to recover from your procedure. And your specialist is booked out for the next few weeks. So, of course, you wait.
You’re on a new treatment. Something that has “worked for other patients.” You’re excited you could be one of those patients. Maybe it’s working. Your symptoms aren’t getting worse, but you know they aren’t getting better either.
You’re exhausted. You don’t know if it’s from all the physical pain or all the emotion that goes into getting through every day sick. You’ve left your job. Your lifestyle has changed. You’re relying on your closest friends and family for help. Even though they’re not exactly sure what’s going on. You’re not exactly sure yourself.
Back to the specialist. This time you’re organized. You’ve noted every symptom change. Possible triggers. You’ve had nothing else to do. You’ve got questions. You want answers.
They don’t have them.
Now you’ve got a new referral. To a different specialist. Maybe two. A fresh set of eyes. But you’ve also got another referral. This time for your mental health. Do they think you need extra support or just that it’s “all in your head?” Either way, you’ll try anything to get relief.
Panic sets in. Maybe you’ve been searching in the wrong place. Surely no harm in looking elsewhere? Alternative medicine has some merit, doesn’t it? You’ve got another month before you see your new specialist, so might as well try something new.
You try everything anyone has ever suggested to you. It’s going nowhere. You wait.
Your new specialist has some ideas but you don’t connect with them. They see your emotional distress as the possible cause of your symptoms. But didn’t you just tell them the problems started long before you started to fall apart? Do they not believe you? Maybe they’re right? Stress does make things worse… No. Anyone would be distressed in this situation. You know you’re sick. And you’ll find someone who takes you seriously.
You do your research. Make the calls. You’ve found someone who might help.
But there’s a waiting list.
Will this cycle ever end?
As always, you’ll just have to wait and see.
I’m sure you get the point. This is just a snippet of my Diagnostic Waiting Game. It has become my full-time job and I’m left without answers to explain why. When you’re chronically ill, but not critically ill, you fall lower and lower on waiting lists. The longer you’re sick, the longer the waiting feels. Possible distractions, like work, socializing or leisure activities become impossible to commit to because you’re just too sick. There’s nothing left to do but wait. And these periods of waiting are without a doubt the most unbearable pain I have ever felt.
Every undiagnosed, chronically ill person has a different story. And every story deserves to be heard, now.
No more waiting.
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Thinkstock photo via Wavebreakmedia.