Waking up one day with crippling fatigue and unexplained chronic pain is really freaking hard. But having all of this and not knowing why is arguably worse. Trust me, I’ve been there. Going through this process can break you, especially when there are doubts that the pain exists at all.
I managed to get through it (multiple times mind you) but I know many of you reading this are still trying to get diagnosed. So here are 5 tips that will help you out. I don’t have the power to diagnose you (although I wish I had). Hopefully, these tips can make the process a little easier.
Write A Pain Diary
I’m going to shout this one because it’s so important (so make sure you’re reading in a shouty voice). WRITE. A. PAIN. DIARY. I don’t know about you but I struggle to remember what I did this morning, let alone what happened months ago. Writing a pain diary will be a lifesaver.
Every day, write the symptoms you’ve been having. Write it in a journal, a word document or on the back of Twix rapper (don’t do that). Just make sure you write it down. Also, write what level the pain is. I tend to do this on a scale in 0-3 (a scale up to ten gets confusing). After a while, you’ll start to see trends and make connections. Even better, you’ll be able to give your doctor a better view of what’s wrong.
Do (A Little Bit Of) Research
Here’s a bit of a disclaimer. I am not telling you to diagnose yourself. Only a doctor can do that. However, I think a bit of research aids the diagnosis process. In fact, I can say it saved my life.
When first trying to get diagnosed with Lupus, doctors told me everything work was fine. Spoiler alert, I wasn’t fine. After that day, I went home and researched my symptoms. I didn’t try to find a single diagnosis but I made a list of five diseases that sounded like what I was going through and checked the necessary tests. I went back to my doctor to discuss these options and was able to get more specific tests from a rheumatologist.
I’ll say this again, please do not try to diagnose yourself. However, I think it can be helpful to do a bit of research and have a discussion with your local GP about options in moving forward.
Bring A Chaperone
I’m going to admit something. I’m 22 years old, and my mum still comes to my appointments. And you know what? There’s absolutely nothing wrong with that. I used to think when I turned 16, I had to be a big girl and go to all of my appointments alone. That changed when I got chronically ill.
Doctors are amazing and I am so grateful for the NHS, however, they’re not always best at explaining things. Sometimes it helps to have another person for moral support or to listen to what was said. With all the medical jargon, it can be hard to remember it all, so it helps to have someone else there
Get A Second (Or Third…Or Fourth) Opinion
Once again, doctors are amazing, but they’re not always right. The problem with a lot of chronic diseases is that they are hard to diagnose. They often lack funding and research which means there are fewer people well versed in diagnosing these conditions.
While one doctor may think you’re okay, another doctor who is more familiar with certain conditions may see something the first one didn’t. I know it’s hard, but if you’re strong in your convictions, seek another opinion. Don’t give up.
It’s exhausting going through countless tests, referrals and long waiting times. The diagnosis stage is not easy. It’s both physically and mentally painful. This is why it’s important to check in on yourself. Practice self-care, however, that looks for you. Diagnosis can take a long time. For some of us it’s a few months, for others it’s a few years. It’s important to feel love and support for others, but it’s equally as important to feel this from yourself.
So those are my five tips. I hope these help, even if it’s just a little bit. And if it’s any consolation, I believe you.