I'll start off by saying a little bit about me. I'm 22 years old and it's only around now the Drs are finding out all the things that I'd complained about were actually real, and have names. It's a really exciting time for me, as a person who suffers with a bunch of invisible illnesses, to be in the stage of enlightenment.
And I feel very lucky to have a team interested in getting to the bottom of it, even if they must admit they can't do much about it but give me the least gross drugs and hope it does something.
While as a creature, I'm still under investigation, so far they've figured out I have a mood disorder, have Hypermobility Syndrome, have Vertiginous migraine with auras, and have an auto immune disorder attacking my thyroid. I was going to miss this out, but I also have Menorrhagia, and perhaps that deserves a little attention later on; it's always ignored. I'm also certain I'm on the autistic spectrum and just waiting for a Dr to shrug and say 'why not'.
As a sufferer of invisible illnesses, I know the struggle of feeling absolutely awful, and having to man it up because I 'look fine'. And seeing the hypocrisy of the person who drank themselves into a hang over being free to complain of their 'ill fate' that they brought onto themselves, but being chastised for complaining about my own ailments. I also know the fear of going to the Drs every month for a medication review, more symptoms left unchecked, new symptoms emerging, and the anxiety associated with the very likely raise of an eyebrow and the 'you are just anxious, and need to stop thinking things are wrong with you' response from a Dr.
Of course, this isn't to say that it's any easier for someone with a visible illness, because if you can't be cured, sometimes that's all it takes for a person to effectively 'give up' on you and brush you off for the more favourable patients who can tick the boxes a Dr went into the job for; someone they can really help.
If I've learnt anything over this last year as my illnesses finally started coming to light, I think it's been that Drs aren't the bad guys, they have their own weird emotion attached to your illness often, despite it being your own!
The other thing would be that with Chronic Illnesses, it's not about being pain free or finding the closest thing to a cure, it's often about considering the options, 'do I deal with this pain, or do I deal with this pain.' The drugs don't offer a cure, they offer an alternative, normally at a price, the same with most things in life. It's about looking at the options and making the best choice for that day. We aren't suddenly 'normal' because we're being 'treated' because it's a Chronic Illness. The nature of them is that they are always there to be managed, not forgotten.
And after feeling so long that Drs were never going to offer anything and I somehow should be able to make it go away on my own, this strangely feels... OK. I think I can deal with it. I'm not looking forward to being in pain every day of my life, or worrying if I go out today that might mean the next 2 are in bed. But... I can accept it as part of my life now, as long as I remember one of the greatest skills in life is creative thinking. That's how we deal with things, and that's something I have on my side.
And I feel very lucky to have a team interested in getting to the bottom of it, even if they must admit they can't do much about it but give me the least gross drugs and hope it does something.
While as a creature, I'm still under investigation, so far they've figured out I have a mood disorder, have Hypermobility Syndrome, have Vertiginous migraine with auras, and have an auto immune disorder attacking my thyroid. I was going to miss this out, but I also have Menorrhagia, and perhaps that deserves a little attention later on; it's always ignored. I'm also certain I'm on the autistic spectrum and just waiting for a Dr to shrug and say 'why not'.
As a sufferer of invisible illnesses, I know the struggle of feeling absolutely awful, and having to man it up because I 'look fine'. And seeing the hypocrisy of the person who drank themselves into a hang over being free to complain of their 'ill fate' that they brought onto themselves, but being chastised for complaining about my own ailments. I also know the fear of going to the Drs every month for a medication review, more symptoms left unchecked, new symptoms emerging, and the anxiety associated with the very likely raise of an eyebrow and the 'you are just anxious, and need to stop thinking things are wrong with you' response from a Dr.
Of course, this isn't to say that it's any easier for someone with a visible illness, because if you can't be cured, sometimes that's all it takes for a person to effectively 'give up' on you and brush you off for the more favourable patients who can tick the boxes a Dr went into the job for; someone they can really help.
If I've learnt anything over this last year as my illnesses finally started coming to light, I think it's been that Drs aren't the bad guys, they have their own weird emotion attached to your illness often, despite it being your own!
The other thing would be that with Chronic Illnesses, it's not about being pain free or finding the closest thing to a cure, it's often about considering the options, 'do I deal with this pain, or do I deal with this pain.' The drugs don't offer a cure, they offer an alternative, normally at a price, the same with most things in life. It's about looking at the options and making the best choice for that day. We aren't suddenly 'normal' because we're being 'treated' because it's a Chronic Illness. The nature of them is that they are always there to be managed, not forgotten.
And after feeling so long that Drs were never going to offer anything and I somehow should be able to make it go away on my own, this strangely feels... OK. I think I can deal with it. I'm not looking forward to being in pain every day of my life, or worrying if I go out today that might mean the next 2 are in bed. But... I can accept it as part of my life now, as long as I remember one of the greatest skills in life is creative thinking. That's how we deal with things, and that's something I have on my side.