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Living with chronic pain or any chronic illness is one of the hardest things a person can go through, and the fight for an official diagnosis can be even harder. Jumping through hoops and practically begging to be heard or taken seriously.
That’s the situation I am in and what led me to stop chasing a diagnosis and focus on living well despite pain.
It can make us feel like “it’s all in our head” and nothing is wrong with us. A diagnosis should mean that you’ll finally be cured, right? But what if years later you are still yet to get one?
*The information provided in my blog posts is strictly from my own experiences and is not intended to replace medical or professional advice. Do not disregard any medical advice you have received after reading any of my posts. For more, please read my disclosure page.*
THE DIAGNOSIS CHASE
In the first few years of living with chronic pain, I was determined to get an official diagnosis. Tired of being pushed aside by doctors and specialists, enough was enough.
I told myself I had to be more persistent and take a different approach. I’d seen nearly every doctor at my GP surgery and countless specialists.
I’d been misdiagnosed, plied with god knows how many medications and told the pain was all in my head and there is absolutely nothing wrong with me.
I was no longer willing to take no for an answer or “you’re fine” as a diagnosis. At the time, I felt that having a name for the pain would lead to a potential cure.
No more putting baby in the corner!
My determination to get a diagnosis was there more than ever.
I looked up every condition that I shared symptoms with; I went to my GP, had every test, and tried everything possible to push for a diagnosis.
A year later I found myself still with no diagnosis, in even more pain and more stressed and depressed than ever. Focussing on getting a diagnosis meant that I stopped taking care of myself.
The chase had to stop!
The focus became managing my pain, taking care of myself better and figuring out ways to live a more fulfilling life despite living with chronic pain.
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HOW TO STOP CHASING A DIAGNOSIS
TRUST YOUR DOCTOR
After being let down so many times by doctors, I became a little resentful towards them.
I no longer trusted anything they had to say and felt like they had no clue what they were talking about.
But I had to get over that resentment and distrust and approach things differently.
Instead of discounting everything that they had to say and despite my experiences, I let my guard down and started putting my trust in them.
Believe me, it is easier said than done. But it can relieve so much stress!
If you feel uncomfortable or disagree with your doctor or specialist is putting forward, ask questions. I ask a million questions when I see doctors. It can make you feel more comfortable and also lets the doctor know that you mean business.
QUICK TIP– TAKE SOMEONE WITH YOU TO APPOINTMENTS
If you still feel uncomfortable or feel like it’s pointless seeing doctors, take someone with you to your appointments. My mum comes with me to all of my important appointments. Not only is it comforting to have someone with you for support. But bringing someone with you can bring a different perspective. They may ask questions you didn’t even think of.
BE PRESENT AND FOCUS ON THE NOW
Chronic pain is something that seems to confuse even the most qualified doctors and specialists.
You can’t see pain, so it’s often misunderstood. I’ve been misdiagnosed and given medications that do not help so many times.
I was at my doctor’s surgery nearly every two weeks, constantly telling them I am still in agony and they have to do more to help me. I became part of the furniture.
But if at first you don’t succeed, right? – Not really.
I felt like a pest, like I was difficult; it was all too overwhelming. I lost sight of the tools that could help me in the present and put my all into a future diagnosis.
Although a diagnosis can lead to getting better treatment or even getting rid of the pain completely.
That doesn’t mean there are no tools to help you cope with living with chronic pain before you reach that stage.
- Focus on what you can do now
- Ask your doctor what tools can help you now?
- Add those tools to your pain management toolbox.
Although I still have no concrete diagnosis, I have still found tools to help me in the present.
TAKE A DIFFERENT APPROACH TO APPOINTMENTS
Because I suffer from pelvic pain, they have bounced me from all different specialists and departments. From gynecology to neurology and nearly everything in between.
It’s a lot to deal with. But at a point in time, it was something I was willing to endure.
Seeing different doctors and specialists meant going over the same thing again and again.
With every different person I saw, I had to repeat – when the pain started, what areas it affected, what medication I had tried, etc. It became like a script that I memorised word for word and was ready to recite it on cue.
Having to go over and over things can have such an impact on your physical and mental health.
Living with chronic pain often means that our energy levels are very low all the time.
So why put yourself through more stress and drain the tiny amount of energy you have. Preserve as much energy as you can and focus on the healing process.
Once I stopped chasing a diagnosis and focused on healing, I approached my doctor’s appointments a lot differently.
I no longer stepped in, desperate for a diagnosis. Instead, I focused on what I could take from appointments to help me now.
For example, at one of my appointments and after going over my script yet again. The specialist was honest and was doubtful that my diagnosis would come easily.
But he gave me some great reading material around managing pain, exercise and different diets that could help me cope better.
Although I didn’t get a diagnosis that I was once desperate for, I got some great advice to help me manage my pain in other ways. Some of those tips and information are now a part of my chronic pain toolbox.
GIVE TESTS A CHANCE
This may not apply to everyone living with chronic pain, but from having conversations and reading about people’s experiences with pain, it seems like something most of us have in common. The relentless tests and examinations that we go through.
Although I am no longer chasing a diagnosis, I know someday it may happen. I am still willing to have tests and examinations.
They may or may not find the root cause of my pain, but I would hate to miss out on something that could help with my pain in the long run.
Give tests a chance, you just never know. Having tests allowed my doctor to rule out anything sinister. Some tests are uncomfortable and may seem pointless, but try to push through.
I know how hard it is to get out of bed and make it to appointments when you are in pain, but trust that your doctor wouldn’t put you through anything unnecessarily. Their job is to make people feel better, have faith.
THE MEDICATION ROULETTE–Medication isn’t always the only option
I have been suffering from chronic pelvic pain for ages, meaning I have tried a ridiculous amount of different medications.
I’m surprised I don’t rattle when I walk.
But again, like having different tests, it boils down to a process of elimination. Test things out and see what works for you. I tried God knows how many medications before I found any that helped.
I won’t sit here and say that it’s as easy as swallowing a pill and waiting for the pain to dissolve. Trialing medications can come with many side effects and frustration. Medication isn’t always an easy fix.
Try to look at it as just one part of how you manage your pain.
Often when you visit a doctor and tell them about your pain, the first thing they prescribe you is medication. They rarely offer other options to you, particularly in the UK where I live.
It took me a long time before being referred to a pain clinic that doesn’t focus solely on medicine.
Try medication, but also ask your doctor about pain clinics and other alternatives to medication. Try to do some research on alternative methods you can try, such as acupuncture, CBD and heating pads.
Combining medication with other pain management tools has made a major difference for me. Although the pain is always there, it has become a little more manageable.
If you need some ideas for alternative pain management methods, check out – Common Alternative Treatments for Chronic Pain and Naturopathic Strategies for Pain Relief.
DON’T OBSESS OVER RESEARCH
I know doctors always say to stay away from Google, but I couldn’t help myself. Doing a bit of research for yourself can be useful, but can also cause a lot of stress and anxiety.
After years of being made to feel like I was exaggerating my pain, I did my own research. I came across so many conditions I shared symptoms with.
Although my research helped a little to eliminate certain conditions. It also made me feel anxious and scared.
Coming across so many conditions made me feel overwhelmed and even more stressed than I already was.
I was constantly looking up something and thinking okay, surely I have X or Y. Followed by stressing out because I thought it could be something serious. I had to take a step back. My mental health was suffering because of it.
If you do research of your own
- Pace yourself and take it one step at a time – Having such an overload of information, when you have an undiagnosed illness, is not the best for your mental or emotional health.
- Don’t obsess over it as I did!
- If you feel yourself spiraling, take a step back – It’s hard to put your trust solely into doctors, especially if you feel like they have let you down, but leave it to them.
- Trust the doctors and focus on being as healthy as possible.
- Try not to stress out – Stress can play a major part in making the pain worse so focus on keeping your stress levels to a minimum.
QUICK TIP – FIND YOUR TRIBE
Communicating with others who share similar symptoms and experiences has also helped. I am a part of the MIGHTY which has allowed me to read so many stories, conditions, and perspectives. I can communicate with those with chronic pain and other chronic illnesses, which has made me feel like I am not alone. Try it, it’s so refreshing to speak to someone who understands.
Chasing a diagnosis is frustrating, tiring, and draining. The constant tests and going back and forth with doctors can really take a toll on you, both physically and mentally.
I let finding a name for my pain become a priority and put caring for myself on a back burner. After putting myself through so much, I had to make self-care a top priority.
It’s so important to take good care of yourself, especially when living with chronic pain. I know it can be hard when you’re in agony and need to stay in bed.
But self-care doesn’t always have to be things that consume more energy than you have.
Something as simple as taking a few minutes to meditate, listening to a podcast or creating a night routine can make a difference to your well-being.
Build a routine to help you deal with the stress of all the testing, going back and forth with doctors and the constant pain.
Taking care of your mind and body is important ALL THE TIME, not just on the days you need it most.
It should be something that is a part of your daily or weekly routine, and it doesn’t have to take up too much time or energy.
LIFE WITH NO DIAGNOSIS
I went a long time believing that a diagnosis would mean I’m cured – no more pain. I was prepared to do anything, just to hear a name for my pain.
But I got lost in the quest for a diagnosis, dismissed all tools that could have been helping me, and stopped taking care of myself.
Now that I have stopped obsessing over scouring the internet for answers and being at my doctor’s every week, I have more time to relax and focus on my wellbeing.
The truth is, whether or not I get a diagnosis, the pain is still there. Chasing a diagnosis will not change that.
Instead, I focus on the now and what I can do to best manage and live well despite the pain.
Undiagnosed pain doesn’t mean your helpless!
FYI – I’m not saying to rule out getting a diagnosis, but try not to let it consume you. Take care of yourself, xx.
Are you still chasing a diagnosis? Are you still undiagnosed? Share your story in the comments below.
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Tremendous issues here. I am very happy to see your article.
Thank you a lot and I’m looking ahead to contact you. Will
you please drop me a mail?
As I read your page, it felt like I was reading my story all over again. I’ve had similar experiences as you, and I did not stop chasing a diagnosis even though I was told I had a mental illness and nothing was wrong with me. My body was shutting down daily, and I had to find out what was wrong. Seventeen months later and twenty-six doctors, some of them specialists, couldn’t find anything wrong. I get the essence of your story, and I appreciate the advice of not being consumed by the chase. I suppose I am one of the lucky ones…it was my husband who suspected what my issue was all along, and we finally figured it out. Its been two years of healing and physio to get my mobility back again. When I was diagnosed with a mental illness and told nothing was wrong with me, I decided to share my story because, one, I know I am not the only one in the world with this issue, and two, to give hope to others who are having this horrible experience. My book is aptly titled: No Doctor! You’re Wrong. I am on a mission to bring this condition (that many potentially have but are unaware of) to light and be a beacon of hope to those (most likely women) who are facing misdiagnosis after misdiagnosis. I wish you all well!
I’m so pleased that you resonate with my experiences its nice to have someone who genuinely understands the things we have to go through. I’m really pleased you didn’t give up and that you had the support of your husband to eventually figure things out. I’ll definitely check out your book, so inspiring! I wish you all the best!
I’m still in the process of trying to rule out fibromyalgia, or the bajillion illnesses that can masquerade as it, and it’s exhausting. I’ve been feeling like I’m deteriorating so quickly the past few weeks and it’s not caused by anything that I KNOW I have. At this point, I only want a diagnosis so that I have a name for my pain. I hope I can get to where you are since I assume my quest will be fruitless. Thank you for sharing your experience 🙂
I totally understand it took me a long time to get to this point and everyone’s journey will be different. I hope you are able to get a diagnosis soon! Or at least some form of relief to help you out in the meantime. I really hope in your search you are able to take care of yourself and not let it overwhelm or cause to much stress(i know its harder said than done) but we know how much pain hates stress! Wishing you all the best on your journey, feel free to reach out at any time. xx 🙂