At my last doctors appointment I stopped my doctor just short of them stating that my illness wasn’t that serious. It’s not something I particularly wanted to hear them say out loud. We don’t always see eye to eye on my treatment, and I suspect that they sometimes feel I overreact when it comes to my illness. However, I had no desire to hear my suspicion confirmed.
This moment reminded of the fact that if I hadn’t seen another doctor on the fateful day when endometriosis was first mentioned to me, I’d probably be none the wiser even now as to what was wrong. Their quiet insistence that there was nothing there, and there was nothing wrong with me, melted away the moment I repeated my symptoms to another doctor.
They recognised the hallmarks of endometriosis immediately and my diagnosis and eventual treatment started not long after. While I not recommending that you ignore your health professionals advice, I’d urge you to be mindful of the fact that only you know the pain that you are in, and how it effects your quality of life. To that end, you don’t have to be complicit in the marginalisation of your illness, because you don’t always have to take your doctors word as gospel.
The doctor/patient relationship is two way
I should caveat the subject to this post heavily. Your health professional is certainly the person who knows your personal circumstances and specific treatments best. That is true the vast majority of the time. I’m just conveying the epiphany that I’ve had since becoming chronically ill – that you can listen to your doctors opinion of your illness, treatment and their recommended next steps, but you don’t always have to agree to it and you are certainly within your right to ask for someone else to review your circumstances.
Being treated for any long-term illness means having a degree of tenacity when it comes to your relationship with your doctor. There was a time when I hung on my doctors every word, following the course they set without question. That’s the bottom line of my argument really, that being treated by someone doesn’t necessarily mean that you lose the ability to question their authority, you can suggest another way, or give greater priority to another symptom. A doctor/patient relationship can and should be two way. With both of you working together to improve your quality of life. Equip your doctor with the information they need to give you the best possible healthcare experience.
Despite what I’ve said above my doctor is experienced, friendly and compassionate. However we’ve all got tales of doctors who we greatly admire who let us down in small but precise ways. I hear about these experiences from others all the time. I can only speculate as to the reasons, but I suspect that GPs have exceptional experience of acute illness, even aggressive illness with a tangible solution. I suspect that long-term illness and persistent pain puts us in another, more difficult category. They find our complications as uncomfortable to deal with professionally as those who know us personally.
Perhaps it’s easier then for them to play down how ill we really are, rather than face the reality – a surgery of patients wracked with chronic illness and conditions that cannot be helped any further with what they know has been tried and tested.
Keeping knowledge of chronic illness topped up
Quite often the expectation from my doctors for my treatment follows the model from others who are more able than me, who are still able to spring back and rely on the good days. When you’re chronically ill you’re constantly running on empty. How do you persuade your body to push on and give you a little bit more energy when you’re already at your lowest ebb? Sometimes our doctors recommendations don’t sit well with the reality of what it’s like to live with an illness day after day with no relief.
It’s frustrating trying to communicate the reality of our day to day back to our health professionals. They are the people we’d expect to have the premium on knowledge of long-term illness, but they can sometimes be the people we have to bust the biggest of chronic illness myths with.
It’s why I continue to believe we are the experts when we come to our illness. As patients of our own chronically ill experiences we should continue to fight hard to relate what we’ve learned and what we find hard to those around us.
I think that there is a real lack of knowledge about endometriosis in the medical arena – which is sad. I agree that we know our bodies best. I have learned more about this disease from other women with endometriosis than I ever did from a doctor. Thank goodness for the Internet and women like you who speak out 🙂
Sadly it’s not just limited to endometriosis. Any long-term illness seems to be poorly misunderstood by some doctors. It’s a real uphill battle to get some practitioners to take our illnesses seriously, to the point that many people have undiagnosed illness that they simply have to “put up with” . I completely agree with you about the endometriosis community. I’ve learnt far more from other people than from the medical world.
I’ve nominated you for the liebster award http://sammyhandmade.wordpress.com/2013/09/08/the-liebster-award/
Only if you have time, I just thought you deserved more followers 🙂 take care xx