I bet everyone reading this has heard those words more than a few times, “that’s just viral.” I believe these words are the medical equivalent of hoping the issue resolves itself. But are we limiting ourselves by relying on this excuse too heavily?
I asked a group of Lyme patients what some of the things were that they had heard from doctors, prior to a Lyme diagnosis, that they now know to be false. Their responses:
- You just had a baby
- You have young kids at home
- You’re getting up there in age
- It’s all a part of being an aging female
- Perhaps you should try speaking to someone
- This is chronic fatigue syndrome, there’s no treatment
- The best thing you can do is stay in bed
- Your cortisol must be low
- You are experiencing motherhood
- Try a stress and anxiety class
- This is in your head
- You just need a gallbladder removal
These aren’t all the responses, and I have paraphrased some for length, but can we just take a minute to talk about these lame ways in which chronic illnesses are being denied?
First of all, how many of these responses do you think would ever be said by a doctor to a man. Just because we have a womb does not mean we should be walking around with these symptoms, but that’s what doctors are trying to tell us is the root cause of our problems.
Do you know what these women were dealing with daily? Fatigue that crippled them, muscle weakness that limited their mobility, organ involvement, skin issues, and so many more debilitating symptoms that I couldn’t possibly rhyme off – has having an active womb ever been known to cause any of these? My guess is no.
Secondly, I am a huge advocate of taking care of one’s mental health. In fact, I’m probably guilty of being too easy on myself; but do we really think mental illness could possibly be at the cause of all of the above symptoms? Negative.
I say all the time that the luckiest thing that has ever happened to me is the development of my MAST cell disorder from my untreated lyme disease. When that happened I went from having an invisible illness that people would doubt to an in your face, look at me now, illness. But why does visibility matter? Why would anyone ever choose the isolation and emptiness of being chronically ill unless they were really sick?
Do you know what I did for the past four days? I lied in my bed. I would normally be writhing in pain while doing so but this time I couldn’t move, because any movement at all was causing me to be violently physically ill. About three times a day I’d waddle upstairs and eat with my parents (my only human contact) but other than that I wasn’t really living. I don’t say that to be dramatic – I say that because I literally have done nothing. Why would anyone lie about their symptoms in order to achieve this? Why is the medical community so quick to dismiss patients? What would we gain from this?
When I’m at work and I don’t know how to do something, I ask for help or I pass the task along to someone I know will take care of it. In my experience, doctors don’t seem to want to do this – instead they’re quick to shrug their shoulders and move on to their next patient, but why?
Since starting treatment I am not taking anything not readily available and commonly used here in Canada; yet I was offered none of it prior to my US doctor’s suggestions. In fact, my first diagnosed disease, fibromyalgia, is actually treated in the same way we’re treating my Lyme neuropathy. Do you know how ridiculous it is that there are medications that readily treat things like joint pain, fatigue, arthralgia, and yet I didn’t have access to them because my doctors were too busy (and too uneducated on chronic illnesses, let’s be frank) to treat symptoms? I am fortunate again in that I have a family doctor who is willing to help me, despite this not being her area of expertise, but if my only help was our local specialists I would be wasting away in bed.
Luckily for me, weeks this tough are getting further and further apart, but what happens to those that don’t leave the country for treatment?
These are the millions missing. This is a problem.
I’m thinking about turning this post into a short youtube clip because I think it is something that needs to be heard.
I also know I promised I’d be more cheery; so I made a funny photo to use as this post’s featured image. Ill try harder in the future, but for now I just need to be angry about this. Now I am going to go continue watching the entire 2016 US gymnastics season in bed because that’s about all I can do.