I don't know about you...but it took me years! years of struggling and fighting my doctor before I started getting answers. And in between it all? Well I didn't always handle it so well. I was angry, I was hurting, I was impatient for answers, and I was a bit of a bully. I wanted a quick fix solution to my pain and I didn't want to have to do a lot of work to get it either...I wanted my life back...NOW! And I even got to the point that I was ready to give up.
If you're struggling to get a proper diagnosis...how are you managing and coping with that? Are you ready to give in and give up? It's okay if you are...but...don't! Are you frustrated and angry with how long it's taking? It may take a lot of time and a lot of tests before you find the answers you're wanting....but don't give up!
Here are a few ideas...
- keep a diary of your pain...of the things you can and cannot do...rate your pain daily and record it (to get a good view of your pain levels it's best to record each hour the level of your pain - this will give your doctor an idea of your fluctuating pain levels throughout your days). Also record the days you are feeling "normal" and the days when your pain has you at your limits. What does your pain feel like? Is it sharp pain? tingling? throbbing? how would you describe it? How long can you sit, stand, walk on a daily basis? Record that information too! The more information you can record and share with your doctor the better.
- and when you go and talk to your doctor? be nice!...no one likes to be yelled at or to be around a hostile person...it can trigger many of us. Our doctors are only human...so talk to them the same way you would want to be spoken to. And remember...it's not their fault you're hurting...so don't take it out on them.
- expect and accept that it's going to take time to get a diagnosis...sometimes we like to think our doctors are more capable than they truly are but even they have their limits. Our doctors are only human too and they don't know everything and it takes time to arrange the tests that may be needed. Depending on where you live...your ability to pay for such tests or to have your insurance cover them, may also be a problem to wait through...so be patient...it's gonna take time.
- and when a test comes back negative...as in that's NOT what's wrong with you and even more tests are needed...don't give up! NOPE! don't do it! and you may even find you get misdiagnosed...don't give up then either. Keep trying! keep communicating and keep advocating for yourself and your medical needs
- if your doctor can't seem to figure it out...ask for a second opinion. It's not insulting to ask for one. Perhaps a pain specialist may have more information on how treat and diagnose what you're living with?
- even if you don't have a diagnosis yet...there are still things you can do to help yourself through your pain days. Don't stop caring for yourself! Find the things that help you to manage your pain (record these things in your diary too okay? and share this information with your doctor) and the things that soothe and nurture you. We may not know what's wrong...but we can't stop caring for ourselves and our needs while we wait.
- explore the internet...now I'm not saying to go and diagnose yourself...but if you were to put your symptoms into the search bar...what comes up? Read the information and really give what you're going through some solid thought...and if this could possibly be what you may be living with? bring the information to your doctor and see what he/she thinks. Have a conversation with your doctor but DO NOT diagnose yourself!
- find support! you're gonna need it...sometimes the ones we're closest to may not understand what we're living with so that means we have to go and find the people who can and will understand... they are out there...we just gotta find them. There are internet support groups, websites like this one, on-line counselling, and doctors in a click...there is help to be had and even some understanding too. Finding people living with the same thing you are can be a source of comfort, information, support, and even encouragement. So if you're struggling with family and friends to understand...don't be upset...just go find those who will...we are out there.
- and don't forget support doesn't just come from friends and family...our pharmacists, doctors, chiropractor, massage therapist, counsellor, social worker, support/case worker...they are a wealth of information and may have some ideas on where you can go to get the help you need. Check out your local Mental Health Association as well okay?
- the most important part of this in my opinion? is how you talk to yourself through all the head scratching...the words you use when you feel like no one will ever understand...that your doctor will never be able to tell "what's wrong with me?"...yeah! those words. Struggling and fighting to find out "what's wrong with me?" can leave some of us beating ourselves up and that needs to stop! Please...just don't! Do not beat yourself up! Do not hurt yourself with your words nor your actions. Just Don't! If pain is going to be a part of your life now? you are really going to need you to see you through this. Be your own best friend instead of your own worst enemy? Please?
(okay so maybe I have more than few ideas...but they're important...and you know what? so are you!)
Living with something that others can't see or don't understand can leave us all scratching our heads and it can leave us wondering...what's wrong with me? I'd like to think there is nothing wrong with us...we're just medical mysteries and like all good mysteries...they take some time to unfold. Give yourself that time okay? And do it without beating yourself up! ...oh! and those you share your life with and who are trying to help you...don't beat them up either...we're all just doing the best we can with what we got.
So stop scratching your head and just go take good care of you...and your needs too okay?